SOCIAL INCLUSION AND WELLBEING
OF FAMILIES OF CHILDREN
WITH SPECIAL NEEDS
TRANSNATIONAL STUDY REPORT
Project no. 2016-1-RO01-KA204-024504
Building Bridges: Promo�ng
Social Inclusion and Wellbeing for Families
of Children with Special Needs
Aurora Adina Colomeischi - Romania - coordinatorGemma Fillella Gui - Spain
Maria Augusta Romão da Veiga Branco - PortugalSonja Alimović - Croa�a
Ingrida Baranauskiene - LithuaniaMine Gol-Guven - Turkey
SOCIAL INCLUSION AND WELLBEINGOF FAMILIES OF CHILDREN
WITH SPECIAL NEEDSTRANSNATIONAL STUDY REPORT
Project no. 2016-1-RO01-KA204-024504
Building Bridges: Promo�ng
Social Inclusion and Wellbeing for Families
of Children with Special Needs
Aurora Adina Colomeischi, Romania, coordinator
Gemma Fillella Guiu - Spain
Maria Augusta Romão da Veiga Branco - Portugal
Sonja Alimović - Croa�a
Ingrida Baranauskiene - Lithuania
Mine Gol-Guven - Turkey
Ștefan cel Mare University of Suceava, Romania
Petruța Paraschiva RUSU
Marius MARICI
Diana Sinziana DUCA
Lleida University, Spain
Gemma Filella Guiu
Agnès Ros Morente
Judit Teixiné Baradad
Polytechnic Ins�tute Braganca, Portugal
Maria Augusta Romão da Veiga Branco
Maria Isabel Barreiro Ribeiro;
Celeste da Cruz Meirinho Antão
University of Zagreb, Croa�a
Ana Wagner Jakab
Daniela Cvitković
Anamarija Žic Ralić
Jasmina Stošić
Natalija Lisak
Klaipeda University
Roma Simulioniene
Regina Saveljeva
Bogazici University, Istanbul, Turkey
Nalan Babur
Mine Gol Guven
Contributors
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CONTENTS
INTRODUCTION
BUILDING BRIDGES: PROMOTING SOCIAL INCLUSION AND WELLBEING FOR
FAMILIESOFCHILDRENWITHSPECIALNEEDS–PSI_WELL ......................................... 5
I.GENERALBACKGROUNDINFORMATIONFOREUROPE ............................................... 8
I.1.Descriptionforsituationofparentsofchildrenwithspecialneeds ............... 8
I.2.Europeanstatistics ................................................................................................. 8
I.3.InclusionPolicies ..................................................................................................... 9
I.4.Supportprogramsforparents ............................................................................ 10
References ..................................................................................................................... 12
II.GENERALBACKGROUNDINFORMATIONFORROMANIA ........................................ 13
II.1.Descriptionforsituationofparentsofchildrenwithspecialneeds ........... 13
II.2.Nationalstatistics ................................................................................................ 15
II.3.InclusionPoliciesinRomania ............................................................................ 17
II.4.SupportprogramsforparentsinRomania ..................................................... 21
References ..................................................................................................................... 25
III.GENERALBACKGROUNDINFORMATIONFORSPAIN .............................................. 28
III.1.Descriptionforparentsofchildrenwithspecialneeds ................................ 28
III.2.Nationalstatistics .............................................................................................. 29
III.3.InclusionpoliciesinSpain ................................................................................. 30
III.4.InclusionpoliciesinCatalunya ........................................................................ 31
References ..................................................................................................................... 31
IV.GENERALBACKGROUNDINFORMATIONFORPORTUGAL ..................................... 32
IV.1.Descriptionforsituationofparentsofchildrenwithspecialneeds .......... 34
IV.2.Nationalstatistics ............................................................................................... 34
IV.3.InclusionpoliciesinPortugal ........................................................................... 36
IV.4.SupportprogramsforparentsinPortugal .................................................... 39
References ..................................................................................................................... 41
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V.GENERALBACKGROUNDINFORMATIONFORCROATIA ......................................... 44
V.1.Descriptionforsituationofparentsofchildrenwithspecialneeds ........... 44
V.2.Nationalstatistics ................................................................................................ 46
V.3.InclusionpoliciesinCroatia............................................................................... 47
V.4.SupportprogramsforparentsinCroatia ....................................................... 49
References .................................................................................................................... 50
VI.GENERALBACKGROUNDINFORMATIONFORLITHUANIA .................................... 52
VI.1.Descriptionforsituationofparentsofchildrenwithspecialneeds .......... 52
VI.2.Nationalstatistics .............................................................................................. 53
VI.3.InclusionPoliciesinLithuania ......................................................................... 56
References .................................................................................................................... 62
VII.GENERALBACKGROUNDINFORMATIONFORTURKEY ........................................ 63
VII.1.Descriptionforsituationofparentsofchildrenwithspecialneeds ......... 63
VII.2.Nationalstatistics ............................................................................................. 64
VII.3.InclusionpoliciesinTurkey ............................................................................ 65
VII.4.SupportprogramsforparentsinTurkey ..................................................... 66
References .................................................................................................................... 67
STRESS, COPING ANDWELL BEING FOR PARENTSOF CHILDRENWITH SPECIAL
NEEDS:ACROSS‐CULTURALRESEARCHSTUDY ............................................................ 68
Introduction ................................................................................................................. 68
Method .......................................................................................................................... 69
Procedure ..................................................................................................................... 70
Measures ...................................................................................................................... 71
Results ........................................................................................................................... 72
Discussion ..................................................................................................................... 88
References .................................................................................................................... 90
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INTRODUCTIONBUILDING BRIDGES: PROMOTING SOCIAL INCLUSION ANDWELLBEINGFORFAMILIESOFCHILDRENWITHSPECIALNEEDS–PSI_WELL
The project entitled Building Bridges: Promoting Social Inclusion andWellbeing
for Families of Children with Special Needs (PSI_WELL) proposes an innovative
approachaimedtofacilitatesocialinclusionandwellbeingforfamiliesconfrontingwith
disabledchildrenthroughadulteducationforparents.Theproject isaddressingtothe
specificneedsoffamiliesparentingchildrenwithspecialneeds(SN)anditisdesignedto
helpparentstoimprovetheircopingstrategiesandtoenhancetheirparentingskillsin
order
to foster their social inclusion and wellbeing. The first aim of our project is to
assessthewellbeing,stressrelatedfactorsandcouplerelationshipofparentsofchildren
withspecialneeds.Thesecondaimistoenhancepersonalresources(suchasindividual
coping,emotionregulation),familyresources(suchasdyadiccoping)andsocialsupport
for parents of a child with special needs through development, implementing and
validatingapsycho‐educationalandsocialinterventionprogram.Thegeneralaimofthe
project is promoting social inclusion, equity andwellbeing for risk families in Europe
throughaninterventionprogramforparentsofchildrenwithspecialneeds.Thiswillbe
reachedthroughobjectives:
(1) Diagnose the level of social inclusion, stress andwellbeing of 1500 families
parenting children with special needs through a cross‐sectional and cross‐national
research;
(2) Developing a psychoeducational & social intervention program for fostering
wellbeingforfamiliesofchildrenwithSN;
(3) Validating the psychoeducational &social intervention program for risk
families through the implementation with 360 parents from European countries of
partnership;
(4) Raising the awareness of the communities regarding the specific needs for
socialinclusionofriskfamiliesanddisadvantagedparentsofchildrenwithspecialneeds
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through conducting an information campaign; (5)Developing a psychoeducational kit
comprising twoworking tools for trainers specialized inworkingwith disadvantaged
parentsbytheendoftheproject;
(6) Improvingparentingskillsandparent‐childrelationships throughdeveloping
an integrative handbook for parents by the end of the project. The target group
comprises 360 parents from six European countrieswhowill be involved in training
activitiesandsocialnetworkinordertoenhancetheirpersonalandparentalskillsfora
better social inclusion. The activities describe specific interventions such as a cross‐
nationalresearchonsocialinclusion,stressandwellbeingoffamiliesofchildrenwithSN
todiagnose the levelof stressandwellbeingofparentsand the implications foradult
education;designingandvalidatingofaPsycho‐Educational&SocialIntervention(PESI)
Programforenhancingsocialinclusionandwellbeingoffamiliesofchildrenwithspecial
needs;developingspecificandcomprehensivetoolstosustaintheinterventionprogram
(suchas:ahandbookforparentsofchildrenwithspecialneeds;apsycho‐educationalkit
for social‐emotional learning training for parents of childrenwith SN, comprising the
trainer’smanualandthetrainee’sworkbook),developingandimplementingatraining
course for trainers;delivering the trainingprogramforparents; creatinganetworkof
support groups for parents of children with special needs in order to facilitate
knowledgeandexperiencessharing,fosteringsocialinclusionaswell;disseminationof
project’s activities and results; sharing the project’s deliverables through website,
workshops,symposium,conferences.
The expected impacton target groups is twofold: on theonehand is expected a
personal development process and on the other hand is expected acquiring specific
parenting skills (the results will consist in 360 parents of children with SN more
resilient and enabled to practice different parenting strategies in order to respond
exactlytotheirchildrengrowinganddevelopmentneeds;theywillovercomethesocial
exclusionbecomingactive involved in theprocessofraisingandsupportingtheirown
childrenwithSN).
Theprojectexpectacommunitymoreinclusiveandsensitivetothespecificneeds
offamilieswithchildrenwithSNandtheuniversitywillberecognizedasanimportant
resource for quality knowledge and experience (provider of an evidence‐based
program).At thenational and international level is expected raising the awareness of
thepolitical deciders regarding the specific needs of families of personswith SN. The
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researchconductedwithintheprojectdrawssomeimplications for family’s lifewithin
socialenvironmentand itwillproposesomesolutions for interventiontoenhance the
lifequalityofthesefamiliesandtheirsocialinclusion,sothattheresultsoftheproject
could serveas abase fordevelopinganeducationalpolicy forparents and familiesof
childrenwithSN.
StrategicpartnershipKA2
StefancelMareUniversityofSuceava,Romania‐coordinator
LleidaUniversity,Spain
PolitechnikInstituteBraganca,Portugal
ZagrebUniversity,FacultyofEducationandRehabilitationSciences,Croatia
KlaipedaUniversity,Lithuania
BogaziciUniversity,Turkey
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I.GENERALBACKGROUNDINFORMATIONFOREUROPEI.1.Descriptionforsituationofparentsofchildrenwithspecialneeds
Astudy,onasampleof11countries,fromEurope,foundthatparentswithspecial
needschildrenstrugglemoredifficultiesascomparedwithasampleofparentswithout
special needs children. Parentswith special needs children are oftenunstable, have a
low economic status, show more often traditional gender role arrangements, have a
lowerhealthcondition,theirwellbeingisdefinitelylower,mothershavelowerratesof
social contactand fathershavesignificantly loweremotionalexchanges.Overall, these
parents facemoreoftensolitude, isolationandsocialmarginalization. (PaolaDiGiulio,
DimiterPhilipov,andInaJaschinski,2014)
Inaddition, thesocialandmentalconditionof theseparents is furthershapedby
theprecarioushealthsystem,underfundedprogramsaimingathelpingtherecognition,
prevention and care services of disabled children, frequent cuts in national health
budget,instabilityinthepoliticalpolicy,dramaticlocal,regionalorEuropeancrisis.
I.2.Europeanstatistics
Itisestimatedthatabout15%ofpeopleworldwidesufferfromaformofdisability,
whethersevereoreasy,andprobably5,1%ofchildrenlivewithasevereoramoderate
formofdisability(EFAGlobalMonitoringReport2013/4)
InEurope it is estimated thatabout15million childrenhave special educational
needs(EuropeanCommission).AccordingtotheWorldReportonDisability(2011), in
Europetherewererecordedthefollowingstatisticsondisability:
0,9percentofboysbetween0and14yearsold,sufferofseveredisabilityand
0,8%ofgirls
moderateseveritywasrecordedincaseof4,4percentofboysbetween0and
14yearsold,and4,0%incaseofgirls.
Asurveywithasampleof40620 families fromEurope,agedbetween18and84
yearsold, foundthatthesamplemeanforfamilieswithdisabledchildrenbeing1,80%
(PaolaDiGiulio,DimiterPhilipov,& Ina Jaschinski). Someotherstudies showthat the
average percent rate of disabled children in Europe is 2,5 (The UNICEF Innocenti
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ResearchCentre,2005).Thesamestudy found that inEasternEuropesomecountries
suchasBulgaria,Russia,Georgia,Hungary,RomaniaandPolandrecorderahigherrate
regardingchilddisabilitythantheothercountriesinthesample.
I.3.InclusionPolicies
Oneof themostmentioneddocumentsregardingspecialneedseducation is “The
Salamanca Statement and Framework for Action on Special Needs Education”. The
documentcameintobeingattheWorldConferenceonSpecialNeedsEducation:Access
and Quality (UNESCO), in 1994, in Salamanca, Spain. The document points out the
importanceofseveraldirectionsofactionsregardingspecialneedschildren.
Education should be for everybody – children with special needs should have
access to regular schools, and discrimination in case of special needs children can be
addressedthebestbyinclusioninregularschools.
TheSalamancaStatementisalsoacalltoactionforgovernmentswhichareguided
to adopt the “highest policy and budgetary priority”, to “adopt as amatter of law or
policytheprincipleofinclusioneducation”,developpreschoolandvocationalstrategies,
develop projects and partnerships between countries, involve different partners in
educationtohelporganizespecialneedspeople…
Another important aspect of the Statement is the initiative to develop inclusive
schoolingandstimulatethecreationofeducationprogramsforspecialneedschildren,
prepare teachers in the field, develop research projects on the topic, fund various
initiativesintheeducationalfield.
Inaddition,equalizationofopportunitymustbeapriority.Countriesshouldcreate
inclusive schools, not special schools, and scientifically based methods should be
incorporatedintoeducationalprograms(TheSalamancaStatement,1994).
In the Salamanca Statement, which contains 50 pages, the words “parent” or
“parents” are mentioned only 22 times, and in most cases parents are mentions as
partners alongwith other education agents. In addition, the statement underlines the
fact thatparentshaverights and theirrelationshipwith their children is an important
aspect,orthatparentsshouldbesupportedandhelpedtobeefficient.Lookingbackto
thisstatementandto itspolicy, it isclearwhytodaywethereareso fewprogramsto
aimparentalsocio‐emotionalhealthandparentingtraining.
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I.4.Supportprogramsforparents
Regarding the special needs children there are twomain interventionpathways:
either children are the target of institutional interventions or parents are targeted as
providersofcareandnurturingfor theirspecialneedschildren.Obviously,whenboth
sidesaredeveloped,familycanbenefitmuchmoreastheinterventionbecomesholistic.
Unfortunately, parents of children with special needs are often overlooked regarding
psycho‐educational interventions. For example, the site entitled European Agency for
SpecialNeedsandInclusiveEducation(EuropeanAgency)scarcelyhasanyinformation
about interventionprogramsforparents.Thesamesituationcouldbefoundincaseof
otherreportsordocuments,whichmentionparentsinthecontextofchildinclusion,or
cooperationbetweenschool,parentsandspecialists.
European funds such as PHARE1 or PETI2, or Norwegian funds (EEA), created a
contextforotherpublications.Themainstrategywastoreachthekeypeoplewhocould
influencethesespecialneedschildrenthemost,andtheyweredecisionmakerssuchas
teachers,principals,specialists insocialsciences, teachersatuniversityoranyone‐else
whocouldvirtuallyprovidespecializedcaretothesechildren.Althoughtherewerefew
interventions,aimedatdirectlyeducatingparents,mosteffortsweremadetofocuson
children,andparentswereconsideredpartnersorcollaborates.
All these efforts target especially children and educators, and their tutors or
parentsareactuallysecondarybeneficiariesofeducationandcare.Mostparents learn
about their child’s disability from internet sites or they pay on their own courses, in
order to find out information and learn techniques which might help their children.
Dealingwiththeneedsofsuchachildcomesfromtherealmoftheexpertoruniversity
areaandonlyparentswhoattendsuchcourseshaveaccesstothequalificationtohelp
theirchildren.
ThereareafewattemptsinEurope,tohelpparentsthroughprogramssuchas:
„VaimupuudegaLasteVanemateÜhing8”,inEstonia,whichmotivatesparents
withchildrenwithintellectualdisability(AssociationofParentsofChildrenwith
IntellectualDisabilities).
1 Poland and Hungary: Assistance for Restructuring their Economies 2 Project for Inclusive Early Education
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“ParentKnowHow”,online,UK,whichisaprogramforparentslaunchedin2008,
andwhichofferssupportandadviceforparentsinneed,throughavarietyofmeanson
differenttopicsofinterest.
Side by Side, EU, a program providing training for families online, in Portugal
(WorldHealthOrganization,2010)
Early Bird Programme, UK, a program which helps parents integrate small
children inschool,managebehaviorandcommunication,andgoodpractices(National
AutisticSociety).
Education plays a significant role in child development and parent‐child
interactions.Childrenwithspecialneedsandtheirparentsoftenfallbehind,skipclasses,
miss vaccinations, go innumerable times to health specialists, have lower quality
relationships,donothaveenoughopportunities to learnefficiently, all suchhardships
beingrathersupportedandfeltbyparentstothesameextent(Filmer,2008)
Policymakers should take into account the need of these parents for personal
resourcesandskillstofacesuccessfullysuchproblems,andalsoapositiveenvironment
inwhichtheymightfeelsafeandprotected.Inaddition,parentsofchildrenwithspecial
needs do not have access, at all, to courses and training at a lower price or for free,
which puts additional psychological pressure upon them. A research funded by
European Union, studying “Families with disabled children in different European
countries”statesinitsconclusionsthefollowing:„Thepromotionofprogramsdirected
at the psychological support of the parents and at improving and managing their
emotionalresourcesseemtobeacrucialpoint.”(PaolaDiGiulio,DimiterPhilipov,&Ina
Jaschinski,2014).MostEuropeancountries lacksefficientandspecialized intervention
programs forparents,all theresponsibilitybeing in thehandsof thehelplessparents.
On the other hand, special needs children own problems that are often seen as very
serious and any intervention should be led by trained specialists. On the other hand,
intervention programs for parents should aim at fortifying parental resources and
buildingappropriateskillsnecessaryformanagingspecialanddifficultchildsituations.
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References
1. PaolaDiGiulio,DimiterPhilipov,andInaJaschinski,(2014)Familieswith
disabledchildrenindifferentEuropeancountries,http://www.familiesandsocieties.eu/wp‐
content/uploads/2014/12/WP23GiulioEtAl.pdf
2. EFAGlobalMonitoringReport2013/4:TeachingandLearning:chievingquality
forall.
3. EuropeanCommission,http://europa.eu/rapid/press‐release_IP‐12‐761_en.htm
4. WorldReportonDisability,WorldHealthOrganization,(2011)
https://www.unicef.org/protection/World_report_on_disability_eng.pdf
5. TheUNICEFInnocentiResearchCentre.(2005).Childrenanddisabilityin
transitioninCEE/CISandBalticstates.Retrievedfrom
http://www.unicef.org/ceecis/Disabilityeng.pdf.
6. THESALAMANCASTATEMENTANDFRAMEWORKFORACTIONONSPECIAL
NEEDSEDUCATION,1994,http://unesdoc.unesco.org/images/0009/000984/098427eo.pdf
7. EuropeanAgency,https://www.european‐agency.org/
8. AssociationofParentsofChildrenwithIntellectualDisabilities
9. WorldHealthOrganization(2010).
10. NationalAutisticSociety,EarlyInterventionstraining:EarlyBird.Asof30
March2013:http://www.autism.org.uk/our‐services/residential‐community‐and‐social‐
support/parent‐and‐familytraining‐and‐support/early‐intervention‐training/earlybird.aspx
11. Filmer,D.(2008).Disability,poverty,andschoolingindevelopingcountries:
resultsfrom14householdsurveys.TheWorldBankEconomicReview,22:141‐163.
12. PaolaDiGiulio,DimiterPhilipov,andInaJaschinski,(2014)Familieswith
disabledchildrenindifferentEuropeancountries,http://www.familiesandsocieties.eu/wp‐
content/uploads/2014/12/WP23GiulioEtAl.pdf
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II.GENERALBACKGROUNDINFORMATIONFORROMANIA
Romania(is asovereign state located inSoutheastern Europe. It has an area of
238,397squarekilometresandalmost20millioninhabitants.Thecountryistheseventh
mostpopulousmemberstateoftheEuropeanUnion.CapitalcityofRomaiaisBucharest.
InOctober2011,Romaniansmadeup88.9%ofthepopulation.Thelargestethnic
minorities are theHungarians, 6.1% of the population, and theRoma, 3.0% of the
population. Hungarians constitute amajority in the counties ofHarghitaandCovasna.
Other minorities includeUkrainians,Germans, Turks,Lipovans,Aromanians,Tatars
andSerbs.
After theRomanian Revolution of 1989, a significant number of Romanians
emigrated to other European countries, North America or Australia. For example, in
1990,96,919Romanianspermanentlysettledabroad.
II.1.Descriptionforsituationofparentsofchildrenwithspecialneeds
Researchers have posited that families of a child diagnosedwith a disability are
negatively impacted and therefore experience more instability and dysfunction than
„typical“ families (Watson,Hayes&Radford‐Paz,2011;Hayes&Watson,2013).When
parents learnthat theirchildhasadisabilityorachronic illness, theybegina journey
that takes them into a life that is often filled with strong emotion, difficult choices,
interactionswithmanydifferentprofessionalsandspecialists,andanongoingneedfor
information and services. Initially, parentsmay feel isolated and alone, and not know
where to begin their search for information, assistance, understanding, and support
(ND20,3rdEdition,2003).
Looking after a child with disability is challenging both physically and
psychosociallygiven that itusually spans the courseof a child’s life, exceeding typical
childdevelopmentneedsandthatparentsaswellasfamiliesarenotatallpreparedfor
it (Ceylan & Aral, 2007; McCubbin & McCubbin, 1987). As a part of the care giving
responsibility, parents encounter a variety of challenges such as overcoming the
disappointments attendant to the original diagnosis and the need to coordinate the
child’s multifaceted medical, educational, and developmental interventions while
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balancing competing family needs (Silver, Westbrook & Stein, 1998). Furthermore,
caringforachildwithdisabilityoftenrequiresadditionalphysical,emotional,social,and
financialresources(Murphy,Christian,Caplin&Young,2007).Parentsfearsocialstigma,
oftenhavealackofunderstandingoftheirchild’sneedsandsomeliveinpoverty.They
are given very little or no support in parenting childrenwith disabilities. As a result
children with special needs are vulnerable and at high risk of being put into state
institutions. Institutional state care further delays the development of children with
specialneedsasoftenchildrendevelopassociateddisabilities.Childrenwhodevelopin
stateinstitutionsarenotintegratedintosociety.Thesechildrenwilloftenrequirelong
termnursingcare,whichironicallyresultsinsignificantlyhighersocialeffortsandcosts
(http://www.childrenontheedge.org/romania‐early‐intervention‐for‐children‐with‐
special‐needs.html).Itisalsonotedthathavingachildwithdisabilitiesaffectsnotonly
theparents,butalsosiblingsandtherelationshipsamongthefamilymembers(Harris,
1994).
Parents of childrenwith disabilities livemore intensely the experienceof school
commencement, because insufficient information or inconsistent support from state
institutionsmakethemfeelhelpless.Mostoftheseparentswantmainstreamingschool
integrationandsupport for themasparentsbutalsoas first educators (Gliga&Popa,
2010). The lack of access to educationwas considered as one of themost significant
infringementsoftherightsofchildrenwithdisabilities.TheCountryReportonRomania
fortheStudyonMemberStates'PoliciesforChildrenwithDisabilities(2013)showsthat
childrenwithdisabilitiesfaceseveralimpedimentstoaccesstheeducationalsystem:
(1) refusal of the schools to register a child with disabilities, particularly with
intellectualdisabilities;
(2)expellingchildrenwithdisabilitiesfromschoolsinthecourseoftheschoolyear
(in this case children with intellectual disabilities also represent a more vulnerable
segment);
(3)difficultyintheformalparticipationtotheeducationalsystem.Evenifchildren
with disabilities are included in amainstream class, no particular attention is paid to
them(Deteseanu,Ballesteros&Meurens,2013).
The school authorities justify the non‐registration or expulsion arguing that the
educational management becomes particularly difficult if a child with disabilities is
included in the educational community due to the lack of adapted curricula, personal
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reluctanceofotherchildrenorparents,andalackof information.Inprinciple,abusive
exclusionofachildfromschoolcanbeappealedinfrontofthecourtsoflaw,butusually
theprocedures are lengthy, therefore thepractical efficiencyof such step canbevery
low(Deteseanu,Ballesteros&Meurens,2013).Theministerialauthorityrevealed,from
a monitoring report on the rights of children with intellectual disabilities performed
duringaprojectofInclusionEuropein2011(questionnairessubmittedtofamilies),that
almosthalfofchildrenwithdisabilitieshavenotattendedanurseryschool.Fromthose
whoattended,mostofthemattendedanurseryschoolforchildrenwithspecialneeds.
The access to the regular nursery schools is regularly being refused because of the
disability (http://www.disability‐europe.net/). Therefore, parents of children with
special needs tend to be facedwith a continuous barrage of challenges from societal
isolation, financialstrain,difficultyfindingresourcestooutrightexhaustionorfeelings
ofconfusionorburnout.
Studiesshowthatsomecountriesaredevelopingearlyinterventionplansforsocial
servicesforfamilieswithchildrenwithdisabilitiesinordertoincreasethechancesthat
these children are educationally and socially integrated. The role of the family in
promotingearlysocialandemotionalattitudesandappropriatebehavior iscrucial for
stimulating the potential of children with disabilities (Baily & Bruder, 2005). In this
sense,someresearches(Guimond,Wilcox&Lamorey,2008)tookintoaccountparental
beliefsontheeffectivenessoftheirprotectiveandeducationalinterventionsinrelation
withtheroleoftheenvironmentonchild’sdevelopment.
II.2.Nationalstatistics
OnMarch31,2017,thetotalnumberofpersonswithdisabilitiescommunicatedto
the National Authority for Disabled Persons within the Ministry of Labor and Social
Justice,throughthegeneraldirectoratesforsocialassistanceandchildprotectionofthe
county,respectivelylocalonesoftheBucharestmunicipalities,was784527persons.Of
these,were61504childrenwithdisabilities registered inRomania.Mostof themare
notlivingininstitutions(NADP,2017).Sotheyarecaredbyfamilymembers.Havinga
familymemberwith a disability can have an effect on the entire family; the parents,
siblings,andextendedfamilymembers.Itisauniquesharedexperienceforfamiliesand
can affect all aspects of family functioning. The importance of valuing the families of
theseyouth,buildingontheirstrengths,andhavingavailableanarrayofsocialsupports
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hasbeenwidelyendorsedinthechildren’smentalhealthfield(Cheney&Osher,1997;
Karp,1993;Koroloff,Friesen,Reilly&Rinkin,1996).
Figure1.Institutionalisedanduninstitutionalizeddisabledpersons(adultsandchildren),
onMarch31,2017(NADP,2017)
Ontheotherhand,accordingtolawno.448/2006ontheprotectionandpromotion
of the rights of persons with disabilities, republished, the types of disabilities are:
physical,visual,auditory,deafness,somatic,mental,psychic,HIV/AIDS,associate,rare
diseases.
Figure2.Numberofchildrenwithdisabilitiesbytypeofdisability,onMarch31,2017
(NADP,2017)
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Also,accordingtolawno.448/2006ontheprotectionandpromotionoftherights
of persons with disabilities, republished, the degrees of disability are: severe,
accentuated, medium and easy. The number of persons with severe disabilities
represents 36.91% of the total, the disabled with accentuated disabilities represents
51.66%andwithmediumandeasydisabilitiesrepresents11.43%(NADP,2017).
However, reports indicate that this figure does not take into account all of the
children with disabilities in Romania since it only includes children with disabilities
registeredintheofficialdatabase.Suchregistrationsareonlybeingmadeonavoluntary
basisbya child’sparentsorguardians. Inaddition, suchdatadoesnotreflect the real
number of children with intellectual disabilities because the legislation and public
policiesdonotdefineclearlywhatfallsunderthescopeofintellectualandpsychosocial
disabilities and mental illness, which generates confusion in providing specialised
servicesandregistration.
II.3.InclusionPoliciesinRomania
Inthepast27yearsinRomaniatherehavebeenmajorchangesatapolitical,social,
economic and educational level. The economic and social transition in Romania, after
communistregime,hadmixedimplicationsfortheeducationofchildrenseenashaving
specialneeds.Policy,researchandpracticeinspecialeducationandinclusionofchildren
with disabilities in themainstream school system and social life are one of themost
important priorities in Romanian educational policies. The basic premise of the
integration/inclusionmovement is thatprinciplesof anti‐discrimination, equity, social
justice, and basic human rightsmake it imperative that studentswith disabilities and
special needs should enjoy the same access as all other students to a regular school
environmentandtoabroad,balancedandrelevantcurriculum(Gherguț,2011).
Romania takesaccountabout internationalbodies recommendationsandcreated
thelegislationontheeducationofpersonswithspecialeducationalneeds,inaccording
whitinternationaldocumentswhichwasjoined:UnitedNationsConventionontheRights
oftheChild(1990),TheJomtienStatementonEducationforAll(1990),TheStandardRules
onEqualisationofOpportunities forPeoplewithDisabilities (1993)andTheSalamanca
Statement(1994)(Vrașmas&Daunt,1997;Gherguț,2011).
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Gherguț(2011)madeabriefpresentationofprincipalmomentsandeventswhich
have marked reform process of inclusion on Romanian educational system after
communistregime:
- Since1993theMinistryofEducationinRomania,withsupportfromUNICEF,has
carried out a series of initiatives in order to explore ways of encouraging the
development of more inclusive practices. The Romanian initiative has included a
programme of awareness‐raising involving teachers, inspectors and teacher trainers
fromaroundthemcountry;
- The Salamanca Conference on Special Needs Education from 1994 came in a
rippedtimeforRomania‐oneyearafterthetwopilotprojectshavestarted–focusing
on integration. The concept of inclusive education was launched inside the two pilot
projects and in the RENINCO (National Network of Information and Cooperation for
IntegrationintotheCommunityofChildrenwithSpecialNeeds)activities,startingwith
theautumnof1994;
- Other teacher education initiatives, such as the Tempus Programs, since 1995,
whichfundcollaborativepartnershipsbetweenWesternuniversitiesandEastEuropean
teachersandtheirtrainers,havetakenstepstowardsdevelopingtheunderstandingof
leadersinthisfieldabouthowtomanageandsupporttheprocessofchange;
- The Education Law from 1995 has included an implicit inclusive approach: all
Romanian citizens have an equal right to education, at all levels and in all forms,
regardless of gender, race, nationality, religious, or political affiliation and social or
economicalstatus;also,thestateisensuringtheprinciplesofdemocraticallyeducation,
and guarantees the right to differentiated education, on the basis of educational
pluralism;
- After1997hasextendedthedevelopmentofpartnershipsbetweenschoolsand
national and relevant international organizations in the field (RENINCO, UNICEF,
UNESCO, etc), developing training programs about integration for teachers in regular
schools and special schools, developing local projects for inclusion, developing
partnershipsbetweenprofessionals,parentsandvolunteers;
- Theisolationinspecialschoolshasbeenslightlystoppedin2001,when18.000
children with disabilities from special schools were transferred to ordinary schools.
Unfortunatelythisdecisionhasgeneratedmanyconvulsionsandresistancestochange
from schools and parents because the conditions needed here were not enough
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developed(forexample,adaptedcurriculum,trainingofteachersandthedevelopment
ofasupportiveattitudeinschools);
- BetweenJune2002‐December2003wasdevelopedNationalProgramASchool
forAlllaunchedbytheMECinpartnershipwithUNICEFRomania,NationalAuthorityfor
ChildProtectionandAdoption(NACP)andtheRENINCO,whichhassoughtinformation,
awareness and preparation of school and community to integrate children and youth
withspecialeducationalneeds;
- Between2004‐2007wasappliedDevelopNationalActionPlanonEducation for
Children with Special Educational Needs with 3 directions: develop and implement
ongoing training programs for teaching staff in schools; schools, families and
communitiesawarenessontheimportanceandpositiveeffectsofsocializationprocess
andsocial integrationof childrenwithdisabilities;acceptanceofhumandiversityasa
naturalfactnecessaryinsociety.
- A Government Decree, 1251 from 2005 has introduced a new concept –
integrated special education – not clearly defined. The terms inclusion, inclusive
education and inclusive school have been also introduced in this recent piece of
legislation, but under the umbrella of integrated special education. The definition of
inclusionintheDecreefrom2005isthefollowing:“Inclusiveeducationmeansanongoing
process of upgrading the school institution, with the aim of exploiting (valuing) the
existingresources,particularlyhumanresources, inorder tosupporttheparticipation in
learningofallpupilsfrominsideacommunity.”Ithastaken10yearssincetheinclusive
conceptalreadylaunchedinthescientificandpracticalworkinRomaniatobeincluded
inapieceoflegislation;
- Legislation has been supplemented by rules, methodologies and regulations
developedandapprovedbyorderofministerbyMinistryofEducation(MEC):Orderby
Ministerno.4378/7.09.1999regardingtheapprovaloftheprogram:"Measures forthe
organizationofspecialeducation”;OrderbyMinisterno.3634/12.04.2000tomaintain
theapprovingthenationalprogram:The integrationandrehabilitationofchildrenwith
disabilities in/by community; Order Minister of Education and Research, no.
5379/25.11.2004onmethodologyoforganizationandoperationofeducationalservices
by teachers support/peripatetic teacher forchildrenwithspecialeducationalneeds in
mainstreamingeducation;OrderMECno.3662/27.03.2003approvingtheMethodology
forestablishingandfunctioningof theCommissionof InternalContinuousAssessment
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of childrenwith specialneeds;GovernmentDecision1251/2005,whichhasstructure,
organization, forms and types of institutions and personnel in special schools and
especiallyintegratedGovernmentDecisionno.1251/2005ontheorganizationofspecial
education; Order Ministry of Education, Research and Youth, no. 1529/18.07.2007
diversity on development issues in the national curriculum; Order of Ministry of
Education, Research and Innovation, no. 3414 of 16.03.2009 on approval of the
FrameworkPlanforspecialeducationschool.
At present, there are frequent debates around the role of environmental and
attitudefactors,inordertoemphasizethatdisabilityisnotanattributeofthepersonbut
rather a relationship between a personwith a particular disability and/environment.
The unadjusted environment is the one that "disables" the person, especially due to
architectural obstacles but not only, and in this relationship the assumption of
responsibilitytoremovebarriersandtofacilitateactiveparticipationinthesociallifeof
peoplewithdisabilitiesbecomesanobligationofeachofus(UNICEF,2013).
Currently, the most powerful international disability instrument is the United
Nations Convention on the Rights of PersonswithDisabilities, adopted by the United
NationsGeneralAssemblyon13December2006,togetherwiththeOptionalandOpen
Protocol for the United Nations Headquarters in New York, starting with March 30,
2007.TheConventionisthehighest legaldocumentthatensuresthe fullenjoymentof
all human rights and freedoms by all persons with disabilities. Romania signed the
ConventiononSeptember26,2007andratifieditbyLawno.221/2010,publishedinthe
Official Gazette no. 792 of 26 November 2010 but has not yet ratified the Optional
Protocol. In order to ensure the effective implementation of the Convention, the
EuropeanCommissionadopted,on15November2010,TheEuropeanDisabilityStrategy
2010‐2020:arenewedcommitmenttoabarrier‐freeEurope,settingouttheprioritiesand
the work plan for the coming years. The overall objective of this strategy is to give
people with disabilities the capacity to enjoy full rights and to fully benefit from
participation in European social and economic life. The strategy focuses on removing
barriersineightmainareasofaction:Accessibility,Participation,Equality,Employment,
EducationandTraining,SocialProtection,HealthandExternalAction(UNICEF,2013).
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II.4.SupportprogramsforparentsinRomania
Thesupportandcaretakingofpeoplewithdisabilitiesisthefocusoftheeducators,
pediatricdoctors,kineto‐therapists,logopedybutalsooftheparents/legalguardiansof
the childrenwith disabilities. The Salamanca Declaration (UNESCO, 1994) underlines
therolethatparentsneedtoplayineducation:“...thepurposeofasuccessfuleducationof
thechildrenwithSENisnotonlythedutyoftheMinistryofEducationandoftheschools.A
successful education necessitates the cooperation of families, community, volunteer
organizationsaswellasthepublicat large”,and later“Parents[…]asmuchaspossible,
needtobegiventhechoiceofthetypeofeducationtheywantfortheirchildren.”Thus,the
currently acceptedmodel for inclusive education is that of apartnershipbetween the
educational psychologist and the parent. This partnership involves a distribution of
responsibilities (O’Connor, 2003; Gliga & Popa, 2010) where the parent overcomes
his/herroleof“client”andtakesanactiveroleintheirchildreneducation.Whetherthis
partnership is successful depends on the interplay between traditional and modern
values in society. Inmany societies teachers are traditionally considered asbeing the
soleactorsintakingeducationaldecisions,andparentsofchildrenwithoutdisabilities
arereluctanttoanychangesintheirchildreneducationalenvironment(Mitchell,2005).
GligaandPopa(2010)focusonparents’viewsaboutinclusiveeducationbecauseofthe
crucialrolethosehaveas“teachers”,“partners”and“lawyers”,especiallyatthemoment
wherechildrenfinishkindergartenandstartschool.Theirroleofteachersisrequiredto
reinforceandgeneralizetheskillsrequiredforformalschooling.Aspartners,theywork
along with the educational psychologists to help the child familiarize with the new
environmentanddemandsandsolveanydifficultiesencountered.Alsotheyoftenhave
to navigate through legislative procedures in order to obtain the financial and
educationalbenefitstheirchildrequires.Thebeliefthatinclusiveeducationcanandwill
workfortheirchildisthereforethecrucialdrive,withoutwichmanywillnothavethe
strengthtoembarkonthispath(Gliga&Popa,2010).
Toincreasetheaccessofchildrenwithdisabilitiestocommunitylife,daycareand
recoverycentersareofvitalimportance.Thenumber,diversityandavailabilityofsuch
servicesarelimitedandontheotherhand,transportinsuranceisakeyelement.InJune
2013, the Bucharest Branch of ASCHF‐R organized 4 focus groups to investigate the
obstaclesfacedbyparentsandtheirneeds.Thereportshowshowharditisforparents
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to find solutions for the complex,educational, rehabilitationandsocialization services
their children need (UNICEF, 2013; www.czaurora.ro ). In order to prevent and/or
overcomethesituationsthatcouldleadtoseparationofthechildwithdisabilitiesfrom
his/herfamilybutalsotheaggravationofthechild'sdeficiencies,dayservicesshouldbe
present in all communities in different forms such as day centers, counseling and
support for parents, recovery centers, occupational therapy centers, assistance and
support,andothers.Localcouncilsandcountycouncilsshould intervenebyproviding
assistanceandsupporttoparentsandbydevelopingdiversified,affordableandquality
servicestailoredtotheneedsofthechildinordertogrowanddevelop(UNICEF,2013).
SocialAssistanceLawno.292/2011mentions thepossibilityof organizing social
services in an integrated system, alongwith those in the field of employment, health,
education or other social services in the community. This way of providing services
impliesaverygoodcoordinationofactivitiesindifferentareasofintervention,aswellas
acloseandeffectivecollaborationbetweenprofessionalsintheseareas.Thepurposeof
providingintegratedservicesistobettermeetthecomplexneedsofusers,aswellasto
make better use of existing resources at the local level (Social Assistance Law no.
292/2011).
Andyet,evenifthereisanencouraginglegislativeframework,thediverseneedsof
childrenmakeparentspersistentlylookforthetypeofcenterwherethechildhasaccess
tomore services and be cared for, encouraged and supported in everything he does.
Sometimesparentshave the initiative to setup sucha center, as itdid in1995,when
parentsofchildrenwithsevereandassociatedneuromotordisabilitiesdecidedtosetup
theAuroraDayCenterorinFebruary2000(www.czaurora.ro),whentheparentsofthe
St. Ana Association have established a day care center with direct care, recovery,
socialization and support for school education for their children with mental and
associated disabilities (www.sf‐ana.ro) and examples can continue. Caritas Romania
(www.caritasromania.ro) founded in 1992 a center for children with Langdon‐Down
Syndrome,whichsince2008hasbecomeacenterforsupportingpreschoolandschool
childrenwithdisabilitiesand their families,andwhich,besides thespecificservicesof
recovery,therapyoccupational,speechtherapy,psychomotricity,providesparentswith
informationandguidance,emotionalsupport,psychologicalcounseling,counseling,and
parentalschoolprograms(UNICEF,2013).
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Many services have been set up and/or developed by non‐governmental
organizations in theearly interventionarea,preciselybecauseof the importancetobe
giventoitbut,atthesametime,havealimitedsphereofaction.TheInocentiFoundation
inBistritahasinitiatedanearlyinterventionprogramforchildrenwithdevelopmental
and neuro‐psycho‐motor deficiencies in the county and offers therapeutic and
psychological rehabilitation and kineto services at home and at home, counseling and
information,supportgroupsforparentsbutalsosupportintakingstepsrelatedtothe
medical recovery of the child (www.inocenti.ro). Another type of early intervention
takes place at Târgu Mureş Center for Early Prevention and Intervention of Neuro ‐
Psycho‐MotorsDisabilities,organizedbytheAlphaTransilvanaFoundation.TheImpuls
Centerhasintimedevelopedanefficientwayofcollaborationandpartnershipwiththe
localauthorities, theNeonatologyClinicandthePrematureClinicof theMureşCounty
Clinic Hospital, with family doctors, so far over 1000 children have benefited by
specialized services aimed at reducing or eliminating neuro‐psycho‐motor delays of
young children aged 0 to 3, as well as counseling and assistance to parents
(www.alphatransilvana.ro).
Opportunities for developing specialized services have been created in recent
yearsbytheactivefundinglinesthroughtheStructuralFunds.Throughtheproject"And
theymusthaveachance!‐supportprogramforthesocialandprofessionalintegration
ofpeoplewithAutisticSpectrumDisorders",forexample,40counselingandassistance
centers were set up and endowed for children/young people with TSA and their
dependents (UNICEF,2013). In thesamecontext, theMinistryofLabor,Family,Social
ProtectionandElderlyPeopleimplementedtheproject"IncreasingtheCapacityofLocal
PublicAuthorities inRomania to SupportChildrenwithDisabilitieswithinTheirOwn
Family". Twenty multidisciplinary mobile teams, consisting of a speech therapist,
physical therapist, occupational therapist, pediatrician, specialized educator, social
worker,havebeencreatedtoprovidesupporttochildrenwithdisabilities,theirparents
andspecialistsinthecommunitywherethechildrenareinordertomeettheobjectives
setintherecoveryplanandtheformationofitsmembersinthecounties:Arad,Arges,
Bihor,BistritaNasaud,Braila,Brasov,Dambovita,Dolj,Galati,Giurgiu,Gorj,Mehedinti,
Vaslui,sector4andsector6‐Bucharest.Themobile teamssetupby theprojecthave
subsequently become an integral part of the services provided by the DGASPC in the
countiesinvolved(www.mmuncii.ro).
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The functioning of the family cannot be separated from the societal context. No
matterhowstrongitmaybe,howevermuchcohesionisamongitsmembers,thefamily
alsoneedssupportfromothermembersofsociety.Inaddition,thesocialperceptionof
disability is often not favorable, social inclusion is inevitably affected by societal and
culturalbarriers(Gherguţ,2007;Roth&Rebeleanu,2007).Aswecanseehere,therole
of society, of the values that it promotes, intervenes, which also contribute to the
integrationofthispopulationintothecomunity.
Synthesizingthedataobtainedfromqualitativeanalyzesandquantitativeanalysis,
Chercheș(2011)reportedthemostimportantproblems/needsencounteredinfamilies
with a disabled child: difficulties in accessing specialized medical services, problems
with the integration of children into an educational structure, insufficient resources
financial difficulties, difficulties for children and families in rural areas in accessing
services (specific therapies,medical recovery services, etc.), the fact that they do not
have information about the services they can benefit from, they have difficulties in
understanding the information provided by the specialists, on the future of children,
given that there are no services such as: sheltered workshops, occupational therapy
centers, residential centers, respiration centers etc. Taking into account these specific
needsofchildrenwithdisabilitiesandtheirfamilies,inordertoimprovethequalityof
individual and family life, the researchers propose a series of steps: accessing non‐
reimbursable funds for the development of new services of those mentioned as
nonexistent; public awareness campaigns on the implications of individual, family,
communityandsocialdisability,andtheroleoftheactiveinvolvementofeachmember
ofsocietyinhelpingthosewhofacesuchproblems;initiatinganddevelopingresearchin
thefieldtoassessthephenomenonandproposingappropriate interventionmeasures;
developing partnerships between public, private and civil society institutions; the
compatibility of legislation in the fieldwith the real needs of this category (Chercheș,
2011).
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References
1. Bailey,D.B.&Bruder,M.B.(2005).Familyoutcomesofearlyinterventionand
early childhood special education: Issues and considerations. Washington,
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2. Ceylan, R. & Aral, N. (2007). An examination of the correlation between
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3. Cheney,D.,&Osher,T.(1997).Collaboratewithfamilies.JournalofEmotional
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4. Chercheș, C. (2011). Calitatea vieții în familiile copiilor cu dizabilități neuro‐
motorii.DoctoralThesis,Babeș‐BolyaiUniversity,Cluj‐Napoca.
5. Deteseanu, D.‐A., Ballesteros M. & Meurens, N. (2013). Country Report on
Romania for the Study on Member States' Policies for Children with
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6. Gherguț, A. (2011). Education of Children with Special Needs in Romania;
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7. Gherguţ, A., (2007). Sinteze de psihopedagogie specială. Ghid pentru
concursurişiexamenedeobţinereagradelordidactice,EdituraPolirom,Iaşi;
8. Gliga,F.&Popa,M.(2010).InRomania,parentsofchildrenwithandwithout
disabilitiesareinfavorofinclusiveeducation.Procedia‐SocialandBehavioral
Sciences,2,2,4468‐4474.
9. Guimond, A. B., Wilcox, M.J. & Lamorey, S.G. (2008). The early Intervention
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10. Harris,S.L.(1994).TopicsinAutism:SiblingsofChildrenwithAutism:AGuide
forFamilies.Bethesda,MD:WoodbineHouse.
11. Hayes, S.A.&Watson, S. L. (2013). The Impact of Parenting Stress:AMeta‐
analysisofStudiesComparingtheExperienceofParentingStressinParentsof
ChildrenWithandWithoutAutismSpectrumDisorder JournalofAutismand
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12. Karp,N. (1993).Collaborationwith families:Frommythtoreality. Journalof
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13. Koroloff,N.M., Friesen,B. J.,Reilly, L.,&Rinkin, J. (1996).The roleof family
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PaulH.BrooksPublishingCompany.
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theT‐doubleABCXmodelof familyadjustmentandadaptation.Madison,WI,
USA:UniversityofWisconsin‐Madison.
16. Mitchell,D.(2005).ContextualizingInclusiveEducation.Evaluatingoldandnew
internationalperspectives,RoutlegeDavid&FrancisGroup,USA,1‐37.
17. Murphy, N. A., Christian, B., Caplin, D.A. &Young, P.C. (2007) The health of
caregivers for children with disabilities: caregiver perspectives. Child Care
HealthDev33:180–187.
18. NationalAuthorityforDisabledPerson(NADP).(2017).StatisticData,Ministry
ofLaborandSocialJustice
http://anpd.gov.ro/web/transparenta/statistici/trimestriale/
19. ND20, 3rd Edition. (2003). Parenting a Child with Special Needs. National
InformationCenterforChildrenandYouthwithDisabilities.
20. O’Connor,U.(2003). Parental Views on Inclusive Education for Childrenwith
SpecialEducationalNeeds,NationalDisabilityAuthority,Ireland.
21. Pinkerton,D. (1991). Preparing Children with Disabilities for School, ERIC
ClearinghouseonHandicappedandGiftedChildren,Reston,VA
22. Roth,M.&Rebeleanu,A.(2007).Asistenţasocială.Cadruconceptualşiaplicaţii
practice,PresaUniversitarăClujeană,Cluj‐Napoca.
23. Silver, E.J., Westbrook, L.E. & Stein, R.E. (1998). Relationship of parental
psychological distress to consequences of chronic health conditions in
children.JPediatrPsychol23:5–15.
24. UNICEF.(2013).Childrenwithdisabilities.Raport,Bucureşti
25. United Nation Educational, Scientific and Cultural Organization (UNESCO).
(1994).TheSalamancaStatementandFrameworkforActiononSpecialNeed
Education,Spain.
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26. Vrasmas, T. and P. Daunt (1997). The Education and Social Integration of
Children and Young People with Special Needs in Romania: A National
Programme.EuropeanJournalofSpecialNeedsEducation,Vol.12,No.2,pages
137‐147.
27. Watson,S.L.,Hayes,S.A.,&Radford‐Paz,E. (2011). ‘Diagnosemeplease!’:A
reviewof researchabout the journeyand initial impactofparents seekinga
diagnosis of developmental disability for their child. InternationalReviewof
ResearchinDevelopmentalDisabilities,41,31
28. http://www.disability‐europe.net/
29. www.sf‐ana.ro
30. www.czaurora.ro
31. http://caritasromania.ro/
32. www.inocenti.ro
33. www.alphatransilvana.ro
34. www.mmuncii.ro
35. http://www.childrenontheedge.org/romania‐early‐intervention‐for‐children‐
with‐special‐needs.html
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III.GENERALBACKGROUNDINFORMATIONFORSPAIN
Spain is a state located on the Iberian Peninsula in southwestern Europe, and it
countswithtwolargearchipelagoes,theBalearicIslandsintheMediterraneanSea,and
theCanaryIslands, intheNorthAfricanAtlanticcoast.Italsohastwocities,Ceutaand
Melilla,intheNorthAfricanmainlandandseveralsmallislandsintheAlboranSeanear
theMoroccancoast. Ithasa totalareaof505,990km2andit isconsideredthe largest
countryinSouthernEurope.
Spain is a parliamentary democracy and constitutional monarchy. The current
Spanishking isFelipeVI. It isamiddlepowerandamajordevelopedcountry.Spain's
capitalist mixed economy is the 14th largest worldwide and the 5th largest in the
EuropeanUnion,aswellastheEurozone's4thlargest.
In 2008 the population of Spain officially reached46million people. 88%of the
populationisnativeSpaniards.Another12%isconstitutedbyimmigrants,mainlyfrom
LatinAmericaandNorthAfrica.ThecapitalisMadrid,with3,165,235citizens.Spainis
alsoconsideredaplurinationalcountry,withdistincttraditionalidentitieswithdifferent
languages.ThesepopulationsincludetheBasques,Catalans,Galicians,Andalusiansand
Valencians.
StateeducationinSpainisfreeandcompulsoryfromtheageofsixtosixteen.The
currenteducationsystemisregulatedbythe2006educationallaw,LOE(LeyOrgánica
deEducación),orFundamentalLawfortheEducation.
III.1.Descriptionforparentsofchildrenwithspecialneeds
According to the current regulations,both the studentand the familyarepartof
the community and theyparticipateproactively, since theyare themainprotagonists.
Familiesandschoolshareacommonobjective:theeducationalsuccessofthestudents.
Family and school are two worlds that need to be recognized to make good
accompanimenttothestudents.
Although parents feel there may be not the ideal support system at times,
according to the Department of Education, families constitute a central part of the
educational community and the schools must be conceived as an essential entity to
develop the projects. Parents of childrenwith special needs are taken into account at
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anymoment of the process. In fact, the relationships between family and school are
basedonmutualrespect,trustandacceptanceofsingularitiesofeachone.Therearenot
two equal teachers, neither two equal families. Contact and relationship with the
families must allow the models of intervention and relationship with children to be
enriched. It is needed that families felt understood, that they have spaces for
participation within the educational project and are counted on them for to the
developmentoftheeducationalassistanceoftheirchildren.
Educativepoliciesenhancea tendency towardsan inclusive school,whichmeans
leavingbehindthesimpleparticipationofthefamilyintargetedprogramsforteachers
infavorofthecreationofnewavenuesforparentalinvolvementindecision‐makingand
in the educational process of their children. This involves an implication with a
collaborative model between professionals and families, in which one and the other
recognizemutuallynecessaryknowledgeandexpertise,whichfocusonenrichmentand
theopportunitiesthataregeneratedbeyondtheneeds.
Thisfactisevenmorerelevantwhenitcomestostudentswithspecialeducational
needs, given the conditions of vulnerability that often gowith their development and
learningprocess.Thecollaborationoffamiliesthus,isacentralkeyforthedetectionof
the needs of the students, and to be able perform the psychopedagogical evaluation
whennecessary.
III.2.Nationalstatistics
AccordingtotheEstadísticadelasEnseñanzasnoUniversitarias,carriedoutbythe
Subdirección General de Estadística y Estudios del Ministerio de Educación, Cultura y
Deporte,Spainhasatotalof2.9%ofthestudents(173.797outofatotalof8.101.473)
withspecialneeds(seeTable1).
Percentage
SexBoys 66.84Girls 33.16
Typeofdisability
Hearingimpairment 4.33Motorimpairment 7.71Psychologicalimpairment 37.39Visualimpairment 1.84Developmentaldisorders 17.45Behaviouraldisorders 22.35Pluridisability 6.01Others 2.91
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Accordingtolatestreports,twooutofthesethreechildrenareboysandSpainis,
together with countries like Luxemburg, Italy and the U.K. one of the countries with
lowerpercentatgeofstudentswithspecialneeds.
III.3.InclusionpoliciesinSpain
TheEducationalSysteminSpainarrangesthenecessaryresourcesforpupilswith
temporaryorpermanentspecialeducationalneedstoachievetheobjectivesestablished
withinthegeneralprogrammeforallpupils.
The public administrations give all the students the necessary support from the
beginning of their schooling or as soon as they are diagnosed as having special
educationalneeds.Itisthus,importanttotakeintoaccountthatschoolteachingisinall
casesadaptedtothesepupils’needs.Didacticplansleadtoprogrammes,whichhaveto
take into account the pupils’ needs and characteristics. Additionally there is an
educationalproject,wheretheobjectivesandtheeducationalprioritiesareestablished,
alongwiththeimplementationprocedures.
TheActontheImprovementoftheQualityofEducation(LOMCE,2013)considers
fourtypesofspecificeducationalsupportneeds:
1.Studentswithspecialeducationalneeds
2.High‐abilitystudents
3.LateentriesintotheSpanisheducationsystem
4.Specificlearningdifficulties.
Among the ordinary measures that the Spanish Educational System offers for
attending to diversity, there are: successive levels of curricular formulation, involving
theprogressiveadaptationoftheofficialcurriculumandoptionalareasandsubjects,the
organizationofreinforcementandsupportactivitiesineducationalestablishments,and
specific grouping.Onceordinarymeasuresof attention todiversityhavebeenapplied
andhaveprovedtobeinsufficienttorespondtotheeducationalneedsofanindividual
pupil,theeducationsystemconsidersaseriesofextraordinarymeasures.Theseinclude
repeatingacycleorschoolyear,significantcurricularadaptations,supportmeasuresfor
pupils with special educational needs, curricular diversification and, as a last resort,
socialguaranteeprogrammes.
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III.4.InclusionpoliciesinCatalunya
Booth (2002) emphasizes that inclusive education is constituted by a body of
valuesthatimpregnatebothculture,suchaseducationalpolicies,andteaching‐learning
practices, whichmake it possible to ensure that all people, regardless of their socio‐
economic and cultural origin and their innate or acquired capacities, have the same
learningopportunitiesinanyeducationalcontext.This,atthesametime,helpstocreate
moreequalandfairsocieties.
Inordertocreateinclusivecultures,EducationDepartmentunderstandsthatit is
highly necessary a permanent and renewed dialogue with the families and the
environment. The development of inclusive policies in the centers is based on the
development of a school for all of the students. Schools must organize the resources
properly toensurediversityattentionwithin theireducationalprograms,whichat the
sametimeconsidertheparticipationofstudentsandtheir familiesasacentralpartof
the program development. In these plans, there are the measures and the supports
minimizingtheaccessbarrierswhichanyStudentwithspecialneedsmayfind.Inclusive
practicesare thereflectionofcultureand inclusivepolicies.Thedevelopmentof these
practicesfocusesontwoaspects:
• Providing resources for the learning process and mobilizing resources to
promoteflexibleeducationalprojectsthathavetheco‐responsibilityofalltheteaching
teams.
• Organizing classroom activities that promote autonomy and collaborative
learningamongstudents.
References
1. Booth,T.&M.Ainscow (2002). Index for inclusion.Developing learningand
participation in schools. Centre for Studies on Inclusive Education (CSIE).
http://www.eenet.org.uk/resources/docs/Index%20English.pdf
2. LOMCE,L.G.E.LLEIGENERALDEL'EDUCACIÓ(1970).
3. Fernández‐González,N.(2015).PISAcomoinstrumentode legitimaciónde la
reformadelaLOMCE.Bordón.RevistadePedagogía.
4. González Fernández, Y. (2016). Discapacidad y educación en la enseñanza
obligatoria:percepcionesdocentessobreelalumnado.ODISMET.
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32
IV.GENERALBACKGROUNDINFORMATIONFORPORTUGAL
Fromanethicalandlegalpointofview,theConstitutionofthePortugueseRepublic
(articles67,69and70)assignstothesocietyandtotheStatethedutytoprotectfamily,
childrenandyoungpeople,withaviewtoitsintegraldevelopment,andgrantsaspecial
right for theprotectionoforphanchildren,abandonedordeprivedofanormal family
environment.Thus,thereare3levelsofinterventionfordifferenttypesofinstitutions,
whichwillbeindicatedbelow,eachwithdifferentand/orcommonresponsibilities.
WithintheessentialaspectsfortheimplementationofInterventionPrograms,we
are working on the basis that "... family is the first child's development and learning
context, thus being of central interest in the field of Early Intervention in Childhood
(IPI)…» (Sanguinho, 2011), which is why there are more and more national early
intervention programs (IP) being implemented. Any national or regional entity that
promotes or participates in Intervention Programmes that include children or young
peoplehavetoobeytothenine(9)principlesunderlyinganyinitiative,asfollows:
1.Thebestinterestsofthechildandyoungperson,asfirstreferenceoftheaction,
withoutprejudicetothedueconsiderationtootherlegitimateinterests;
2.Privacy,relatedtotherespectforintimacyandimagerightsofthechildoryoung
person;
3.Theintervention,asearlyaspossible,thatshouldbeimplementedassoonasthe
risksituationbecomesknown;
4.Theminimumintervention,safeguardingthatonlytheagentsnecessaryforthe
promotionofrightsandprotectionofthechildoryoungpersonatriskareinvolved;
5. Proportional and current intervention, ensuring that its implementation takes
placeinaccordancewiththeprinciplesofreasonablenessandattheimmediatemoment
tothedecision‐making,producingaminimumimpactinthelifeofthechild,theyoung
anditsfamily;
6.Theexerciseofparentalresponsibility,beingtheinterventiontriggeredsothat
theparentsassumetheirrespectivedutiestowardsthechildortheyoungpeople;
7.Mandatory information, bearing inmind that the child, the young person, the
parents,thelegalrepresentativeorthepersonwhohastherespectivecustodymustbe
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informed of their rights, the reasons that determine the intervention and the way it
takesplace;
8.Participationintheactionsandinthedefinitionofmeasuresandthecompulsory
hearing are ensured for the child or young person from12 years of age, the parents,
legalrepresentativesorthosewiththecustody;
9.Subsidiarity inthe intervention,whichshould lie, inthefirst instance,withthe
competententitiesinmattersofchildhoodandyouth,insecondinstancetotheNational
Committees for the Promotion of the Rights and Protection of Children and Young
People(CPCJ)and,inthethirdinstance,totheCourts.
Thisisthesetofessentialandglobalcarethatthedetectionandsupportmeasures
respect,beingconsideredtobeofcrucialimportancebyalltheinstitutionsinthisfield.
Portugal,isofficiallythePortugueseRepublic,andisanunitarysovereigncountry
locatedinsouthwesternEurope,whoseterritoryliesinthewesternpartoftheIberian
Peninsula and in archipelagos in the North Atlantic. The Portuguese territory is
delimitedtothenorthandeastbySpainandtothesouthandwestbytheAtlanticOcean,
comprising a continental part and two autonomous regions: the Azores and Madeira
archipelagos.PortugalisthewesternmostnationontheEuropeancontinent.Thename
of thecountrycomes from its second largest city,Porto,whoseLatin‐Celticnamewas
PortusCale.Portugal isadevelopedcountry,withaHumanDevelopment Index(HDI)
consideredasveryhigh.Thecountryranked19thinqualityoflife(in2005),hasoneof
thebesthealthsystemsintheworldandisalsooneofthemostglobalizedandpeaceful
nations in theworld. It is amember of theUnitedNations (UN), the EuropeanUnion
(includingtheEurozoneandtheSchengenArea),theNorthAtlanticTreatyOrganization
(NATO), the Organization for Economic Co‐operation and Development (OECD) of
Portuguese Speaking Countries (CPLP). Portugal also participates in several United
Nationspeacekeepingmissions.Theofficial languageofthePortugueseRepublic isthe
Portuguese, adopted in 1290 by decree of King D. Dinis.Withmore than 210million
native speakers, it is the fifthmost spoken language in theworld and the thirdmost
spoken in theWesternworld. It is the official language of Angola, Brazil, CapeVerde,
Guinea‐Bissau, Mozambique and Sao Tome and Principe, and official language along
withotherofficial languages inTimor‐Leste,Macao andEquatorialGuinea. It alsohas
officialstatus intheEuropeanUnion, theUnionofSouthAmericanNations(UNASUR),
the Common Market of the South (Mercosur) and the Common Market of the South
PSI_WELLErasmus+2016‐1‐RO01‐KA204‐024504
34
(Mercosur)andtheAfricanUnion.At the levelofreligion, thePortugueseConstitution
guaranteesreligiousfreedomandequalitybetweenreligions,despitetheConcordatthat
privilegestheCatholicChurchinvariousdimensionsofsociallife.
Talkingabout cities,Lisbon (about500,000 inhabitants ‐3million inhabitants in
the region of Lisbon) is the capital since the thirteenth century (taking the place
Coimbra), thecountry's largestcity,maineconomichub,holdingthemainseaportand
Portuguese airport. Other important cities are those of Oporto (about 240,000
inhabitants‐1.5millioninGreaterPorto),thesecondlargestcityandeconomiccenter,
Aveiro (sometimes called the "Portuguese Venice"), Braga ("City of Archbishops" ),
Chaves (historical and millenarian city), Coimbra (with the oldest university in the
country),Guimarães ("City‐crib"), Évora ("City‐Museum"), Setúbal (third largest port),
Portimão(aportofcruisesandheadquartersoftheAIA),FaroandViseu.
IV.1.Descriptionforsituationofparentsofchildrenwithspecialneeds
Familyisnotanessentialfocusofattention,diagnosisandintervention.Infact,in
Portugal,actionsattheleveloffamilies,especiallyofchildrenwithNE,startfrom–inall
institutionsthatinisolationorinmultidisciplinaryteams–actionsthatsignalize,follow,
protect and intervene in the children of these families. This process is developed as
presentedinthefollowingchapters.
IV.2.Nationalstatistics
Becauseofthemethodologyadoptedandforeaseofunderstanding, thestatistics
presentedherearerecentandbasedonPortugueseinstitutionsthathaveresponsibility
toprotectchildrenandyoungpeopleatrisk,i.e.theCPCJ.
If we took a brief look at the household of the young peoplemonitoredwe can
noticetwothings:
• The high proportion of young people belonging to single‐parent (36.5%) or
reconstituted(13.4%) familieswaswellabove theexistingpercentageon thenational
residentpopulation;
• Although this number has been decreasing, the percentage of caregivers
(parents/family) whose incomes depend on the income support allowance (14%) or
unemployment benefit or pensions (12.8%) was very high when compared with the
generalpopulation.
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Thenumberofmonitoredchildrenhasgrownsystematicallysince2007andonly
wasregisteredaslightdecreasebetween2010and2011.Intheyearunderreviewwere
monitoredless2339childrenthanin2015,correspondingtoadecreaseof3.2%.
Communications/signalling made to the CPCJ – what are the special needs that
arise?
In2016werecommunicatedtotheCPCJ39194situationsofchildrenandyoung
people at risk. The signallingwasmade by public and private entities and citizens. It
should be noted that therewas a decrease of 148 cases of physical abuse and101of
sexualabusecomparedto2015.
Comparing the evolutionof themain situationsof risk signalledover the last six
years(2011‐2016),wehighlightthefollowing:
•Themostidentifiedsituationofriskasof2012wastheECPCBEDC(Exposureto
BehaviorsthatMayCompromisetheWelfareandDevelopmentoftheChild),whichhas
hadanexponentialgrowth,rising12percentagepointsinthelastsixyears;Negligence,
which until 2012 was the most identified situation of risk, has been decreasing in
proportion, but in absolute numbers have increased slightly since 2014; The SPDE
(SituationsofRiskontheRighttoEducation)hasdecreasedsignificantlyinpercentage
values since 2014; The situation of risk CJACABED has increased in percentage and
absolutevalues.However,therearetwoaspectsthatworth'smentioning:
2)Inthefourthmostidentifiedcategory,CJACABED(Child/Youngpersonthathad
BehaviorsthatAffecttheirWell‐beingandDevelopment),thesubcategory"seriousanti‐
social and/or indiscipline behaviors" corresponded to 1492 files (25.1% of the total)
andtherewereidentified440situationsofbulling(7.4%ofthetotal).
Protectionofchildren:Diagnosticsandmeasuresimplemented‐In2016,afterthe
evaluationoftheCPCJ,werediagnosed35950situationsofriskwhichsubstantiatethe
implementationofapromotionandprotectionmeasure.
Situationofdisabilityorimpairment
On the profiling of children there are two specific groupswhich are particularly
vulnerable,thechildrenwithdisabilityorimpairmentandchildrenwithmentalhealth
problems.Thisspecialattentionis inlinewiththerecommendationsoftheCommittee
on the rights of the child of the Council of Europe, on the third and fourth periodic
reportsofPortugal,concerningtheimportanceofthesupportofnon‐discriminationand
social inclusion of children with disabilities and of children with mental health
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problems,finally,980(1.4%)outofevery71016monitoredchildren,wereidentifiedas
havingadisabilityorimpairment.
Table1*‐Childrenandyoungpeoplestudiedbytypeofdisability
Typeofdisability Total %Mental/Intellectual 345 35,2Other 128 13,1SpeechProblems 110 11,2OtherPsychologicalDisorders 65 6,6CerebralPalsy 56 5,7MultipleDisabilities 55 5,6Hearing‐impaired 48 4,9PhysicalDisability 41 4,2VisualImpairment 40 4,1General,SensoryandOtherFunctionsImpairment 29 3,0MusculoskeletalDisorders 27 2,8WithoutInformation 19 1,9OtherOrgansImpairment 14 1,4AestheticImpairment 3 0,3 980 100,0InCPCJ.(2017).RelatóriodeAvaliaçãodaAtividadedasCPCJ–2016.Maio2017
IV.3.InclusionpoliciesinPortugal
InPortugal,2newlawsonchildhoodandyouth,whichdonotexcludeparentsand
family,havebeenpassedin1999bytheAssemblyoftheRepublic:
‐LawonProtectionofChildrenandYoungPeopleatRisk (LPCJP) (LawNº
147/99,of1stSeptember,MinistryofLaborandSocialSolidarity,asamendedbyLaw
Nº31/2003,of22ndAugust),and
‐ Law on Educational Guardianship (Law Nº 166/99, of 14th September,
MinistryofJustice.
Thesetwolegalinstrumentsenteredintoforceon1stJanuary2001.Inthesetwo
laws,theconceptsof"childandyoungperson"ariserepresentinganewapproachinthe
fieldoflaw,sincethislawprovidesforthatachildoryoungpersonis"apersonunder
theageof18yearsorthepersonunder21yearswhorequeststhecontinuationofthe
intervention initiatedbefore reachingage18" (article5of theLPCJP).Basedon these
laws ‐ and particularly on the LPCJP ‐ the promotion and protection measures in
Portugalare:
a)closesupportofparents;
b)closesupportofotherfamilymember;
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c)trusttoareliableperson;
d)supportforlifeautonomy;
e)fosterhome;
f)hostinstitution;
g) trust toapersonselected foradoptionor the institutionwithaviewto future
adoption(thelatterasdefinedinlawNo.31/2003of22ndAugust).
Intermsofpracticalimplementation,andhavingregardtotheLawonProtection
ofChildrenandYoungPeopleatRisk(LPCJP),itiscrucialthattheprotectionofchildren
and young people and the promotion of their rights are the legal responsibility of 3
entities:
1.EntitieswithCompetenceintheFieldofChildhoodandYouth(ECMIJ);
2.CommitteesfortheProtectionofChildrenandYoungPeople(CPCJ);
3.Courts.
1.Theentitieswithcompetenceinthefieldofchildhoodandyouth(ECMIJ)must,
within the framework of its mission, to promote primary and secondary prevention
actions, in particular by defining local plans of action for children and young people,
aimedatthepromotion,defenceandimplementationoftherightsofchildrenandyoung
people (article 6 of the LPCJ). How do they intervene? They assess, diagnose and
intervene in situations of risk and danger; Implement necessary and appropriate
interventionstrategiestodecreaseoreliminateriskfactors;Accompanythechild,young
personandtheirfamilywithintheexecutionoftheinterventionplandefined(article7
oftheLPCJ).Inaddition,theyalsoperformthematerialactsinherenttothepromotion
andprotectionmeasuresappliedbytheProtectionCommitteeorbytheCourt,andshall
drawupandkeepupdatedaregisterthatshouldbearthesummarydescriptionofthe
proceedingsperformedandtherespectiveresults.
TheNational Plan for Early Intervention is set upwithin this context of Entities
withCompetenceintheFieldofChildhoodandYouth(ECMIJ):inotherwords,theLaw
No. 281/2009 introduces in Portugal the National System of Early Intervention in
Childhood(SNIPI), regardinga "organizedsetof institutionalentitiesof familynature,
withaviewtoensuringconditionsforthedevelopmentofchildrenwithbodyfunctions
orstructuresthatlimittheirpersonalandsocialgrowthandtheirparticipationintypical
activitiesof theirage,aswellasofchildrenwithseriousriskofdevelopmentaldelay”.
Thisisanintegratedsupportmeasurethatfocusesonthechildandthefamilythrough
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theimplementationofpreventiveactionswithintheframeworkofeducation,healthand
socialaction.
Whatisexactlythisnationalplan?
‐ Isa setofactions, consistingofMulti‐professional teamsand InterventionSites
(ELI)andaimedatfamilieswithchildrenfromzerotosixyears,thataimstoensurethe
conditionsforproperdevelopment.TheEarlyChildhoodInterventionProgram(IPI)
aims tocreateconditions that facilitate theoveralldevelopmentof thechild; tocreate
conditions for the interaction between child/family, strengthening their skills and
abilities; to support children and families in a systematicway, optimizing the existing
resources in the community and creating formal and informal support networks. It
shouldbenotedthatparentalinvolvementisthekeyforthechild'sdevelopment,given
that familymust participate in all phases of the intervention process, focusing on the
skillsoftheirchildrenandcreatingperspectivesforthefuture.
2. The CPCJ arenon‐judicial official institutions with functional autonomy to
promote the rightsof thechildandyoungpersonorputanendto situations likely to
affecttheirsafety,health,training,educationorfulldevelopment.Thefunctioningofthe
CPCJisgovernedbyLawNo.147/99of1stSeptember.Therefore,andaccordingtothe
law, the CPCJ had the responsibility – whenever it is not possible to the ECMIJ – to
interveneinordertoavoiddanger,topreventorputanendtosituationslikelytoaffect
thesecurity,health, training,educationand integraldevelopmentof thechildren(Law
No147/99, of 1st September, articles8 and12). In Portugal, 309Committees for the
Protection of Children and Young People are already in operation, and more six
committees will become operational soon, in order to achieve full coverage of the
nationalterritory.
The national care system of children and young people at risk is organised in a
structurethatincludes, inaccordancewiththe law,threedistinct levels:1)emergency
care;2)temporarycare,and3)extendedcare.
TheNationalPlanofActionforSocialInclusion(PNAI)wasdefinedwithinthe
frameworkoftheEuropeanSocialInclusionProcess,referencedocumentforguidingthe
intervention required in the national process of social inclusion. In this context, the
elimination of situations of social exclusion which affect children was initially
establishedasagoal,becomingthepromotionandprotectionoftheirrightsoneofthe
priorities to be achieved. In order to make childhood a national priority, the XVII
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39
PortugueseGovernmentestablishedtheInitiativeforChildhoodandAdolescence(INIA),
throughwhichitsoughttodefineaplanofactionfortheprotectionoftheuniversalityof
children'srights.
Among themeasures specifically targeted at the institutional care system in the
lastdecade,itshouldbenoted:
‐ManualofBestPractices ‐Aguide to theresidentialcareofchildrenandyoung
peopletoleaders,professionals,children,youngpeopleandtheirfamily,CID(2005).
‐PlanDOM–ChallengesOpportunitiesandChanges(2007)
‐PlanSERE+(toSensitize,toEngage,toRenew,tohaveHope,MORE)(2012)
IV.4.SupportprogramsforparentsinPortugal
TheCalousteGulbenkianFoundationhas taken thechildrenandyoungpeopleat
riskatthetopof itspriorities.Duringaperiodof fouryears(2008/2011)priorityhas
given to the support for familieswith childrenandyoungpeopleat riskor indanger,
through the execution of projects of parental education, understood as a preventive
measuretoinstitutionalization.
Portugal is currently “performing actions of awareness and prevention", as for
example theactionsunder thePTP (ProjectTeceraPrevenção)orMPMTI (Month for
thepreventionofchildmaltreatment).
Inorder to createat thenational levelmoments andpractical sites that serve to
inform, sensitize and reflect – comprehensively and with great impact – all those
involvedineducation,sincetheinstitutionstoparentsandeducators,thedevelopment
of several activitieswith theparticipationof1263entities/institutions at thenational
level took place during this year, with emphasis on the high participation of
Municipalities,Schools,IPSSandhealthservices.
Promotionofrightsandriskprevention
Theactivitiesinthefieldofpromotionofrightsandriskprevention,developedby
alltheCPCJofthecountryintheexerciseofthepowersconferredtoitinArticle18of
the LPCJP, are to a large extent the implementation of the Project Tecer a Prevenção
(PTP)andtheMonthforthePreventionofChildMaltreatment(MPMTI),since2008and
2010,respectively,withagrowingacceptanceonthepartoftheCPCJ.In2016,theCPCJ
monitored 34 497 children and young people under promotion and protection
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measures, which corresponds to 47.8% of the total number of children and young
peoplemonitored.
Themeasure"closesupportofparents"wasthemostapplied,with27060cases
(78.4%oftotalmeasures). Measures"closesupportofotherfamilymember"followed
with 3427 (9.9%) and the measures "residential home" were applied on 3242 cases
(9.4%).
Theanalysisofthemeasuresimplementedatnationallevel,aspresentedinTable
2,showsthatthemeasureclosesupportofparents(78.4%)wasthemostapplied.The
following are, in descending order, the support to other familymembers (9.9%), the
residential care (9.4%), trust to a reliable person (1.4%), support for life autonomy
(0.6%)andthefosterhome(0.3%).
Table2*‐Measuresimplementedand/orrunningbyagegroup
Supports N/R 0a5y
6a10y
11a14y
15a21y Total %
CloseSupportofParents 274 4942 5588 6308 9948 27060 78,4CloseSupportOtherFamilymember 22 760 696 769 1180 3427 9,9
TrusttoaReliablePerson 3 71 78 122 193 467 1,4SupportforLifeAutonomy 4 1 202 207 0,6FosterHome 1 12 17 26 38 94 0,3ResidentialHome 19 483 377 682 1681 3242 9,4 323 6268 6756 7908 13242 34497 100
InCPCJ.(2017).RelatóriodeAvaliaçãodaAtividadedasCPCJ–2016.Maio2017
The analysis of the 27 060measures of close support of parents, by age group,
showsthatthenumberofmeasuresappliedincreasesindirectproportionwiththeage
increasingofchildrenandoftheyoungpeople.Theagegroupof15to21years‐36.8%
of the total of thismeasure ‐ stands out in contrast to the age group of 0 to 5 years,
which corresponds to18.3%. In thedistributionbygender, thechildrenandyoungof
themalegenderpredominate(56.3%;15225).
Overall, this is the imageof theDiagnostic and InterventionProjects, in termsof
ParentsandChildrenwithSpecialNeeds.
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30. Su R., Tay L, Diener E. (2014). Appl Psychol Health Well Being. 2014
Nov;6(3):251‐79.doi:10.1111/aphw.12027.Epub2014Jun12.
31. UNICEF(1989).AConvençãosobreosDireitosdaCriança20deNovembrode
1989eratificadaporPortugalem21deSetembrode1990.
32. Veiga‐Branco, A. (2007). Competência Emocional em Professores. In. A.A.
Candeias, & L.S. Almeida (Coord), Inteligência Humana: Investigação e
aplicações(p.361‐379).Coimbra:Quarteto.
33. Walsh,F.(2012).Strengtheningfamilyresilience(3rdEd).NewYork:Guilford.
34. Wiener, J., Biondic,D., Grimbos, T. andHerbert,M. 2016. Parenting stress of
parentsofadolescentswithattention ‐deficithyperactivitydisorder. Journal
ofAbnormalChildPsychology,44,561–574.doi:10.1007/s10802‐015‐0050‐7
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V.GENERALBACKGROUNDINFORMATIONFORCROATIA
Croatia is unitary parliamentary constitutional republic and a beautiful country
(countryofthousandislands),situatedinthesoutheasternpartofEuropeontheareaof
56.594km2(21,851squaremiles). Ithasabeautifulscenery,richcultureandtradition.
Croatia has 4.224 millions of people that are members of different ethnics groups:
90.4%Croats, 4.4%Serbs, and 5.2% others(Bosnians, Hungarians, Italians, Slovenes,
Germans,Czechs,Romaniandothers).Childrenandadolescentsconstitute21.1%of the
totalestimatedpopulation‐arelativelylowproportionofchildreninthetotalpopulation.
NatalityandnaturalincrementalrateindicatethatCroatiansocietyisgrowingolder,and
thatthepopulationissteadilydecreasing.
TherearelargedifferencesinpopulationdensityanddevelopmentbetweenCroatian
regionsasmostof thepopulation is concentrated in four county centers:Zagreb, Split,
RijekaandOsijek.
CapitalcityofCroatiaisZagrebandofficiallanguageisCroatian.CroatianGDPtotal
is $59.911 billion (2015.) and GDP Per capita: $13,994. Currency in Croatia is Kuna
(HRK).
V.1.Descriptionforsituationofparentsofchildrenwithspecialneeds
Prevalenceofchildrenwithdisabilities ingeneralpopulationof children is4.4%.
(Benjak, 2017). That alsomeans that theremight be about 4%of parents of children
with disabilities in general population of parents in Croatia. The fact is that those
parentsarevulnerablegroupwithsomespecificneeds.Therearedifferencesinparents’
situationregardingtheageofchildren.
„Young“familieswithyoungchildrenwithdisabilitiesareoftenfullofexpectations,
activeandfocusedonprovidingthebestpossibleservicesofsupportfortheirchildren.
Law from 2012 regulates early intervention, even dough services and education for
early intervention started about six years earlier. Still, there is a huge difference in
number, variety, quality and availability of support services between Zagreb and big
citiesincomparewithsmallcitiesandruralor/anddistantpartsofCroatia.Thatiswhy
parentsreport feelingof frustrationanddissatisfactionwiththe lackof informationas
wellasincompatibilityandpoorcoordinationbetweenservices(Pećnikatal,2013).
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Furthermore, several studies showed that parents reported lack of support not
onlyfortheirchildrenbutalsoforthemintermsofpsychologicalandemotionalsupport
especiallyinperiodduringandaftersettingupadiagnosistotheirchildren.(Leutar&
Štambuk2007;MilićBabić&Leutar2014;Pećnikatal,2013).
Parents also showed dissatisfaction with unprofessional attitudes of experts
towardsthem.(MilićBabić&Leutar2014).
Resultsofonestudyshowthatparentsofchildrenwithdisabilitiesreceivesupport
primarilyfromfamilymembers,thenco‐workers,Church,NGO‐sandfinallyfromsocial
workersfromSocialwelfareCentre(Leutar&Štambuk2007).
During school period parents report lack of support from school especially
misunderstandingandpoorcommunicationwithteachers.Motherscitedasareasonof
brokenmarital relations lack of father role and figure and transfer of responsibilities
fromfather tomother.Mothersstate that fathersare insufficientlyengagedwith their
childrenwithdisabilities. Despite the fact thatmostofmothers stated that theyhave
supportfromtheirspousestillmotherscarrymostoftheburden.Notonlythatmothers
supporttheirchildreninlearningandrehabilitationprocessbutalsotheyadvocatefor
theirrights(Veldić2012.accordingtoIgrićetal.2014)
Ontheotherhandparentsin„old“familieswithelderchildrenwithdisabilitiesare
oftenisolated,exhausted,tired,oldandsometimesill.Thereisaseriouslackofservices
for seniorpeoplewithdisabilities and their families.They relyon theirown strength.
They receive support fromclose familymembersorneighbors.Whileaging theyhave
lessandlessenergytotaketheirchildrentoDaycarecentersorNgo‐siftheyevenhave
thatopportunity.Thebiggestworry to them ishow to secure care to their children if
theywouldnotbeabletodothatbythemselvesortheypassedaway(WagnerJakabat
al.,2016).
Awareness of importance of supporting parents of children with disabilities is
increasing in Croatia. There is more andmore support services for that but still not
enough. Still thereis lackofservicesaddressingsiblingsandgrandparentsofchildren
withdisabilities. It is very important todevelop continuous and systematic emotional
supporttofamiliesofchildrenwithdisabilities.
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V.2.Nationalstatistics
Datafrom2017(Benjak,2017)showsthatCroatiahas4.224millioncitizens.There
are511850childrenwithdisabilitiesanddisabledadults,307934male(60%)and203
916 female.Thereare24278boyswithdisabilitiesand14777girls. Inrelationtoall
populationofchildreninCroatiaprevalenceofchildrenwithdisabilitiesis4.4%.
Largestnumberofchildrenwithdisabilities,29%, lives inZagreband inSplitsko
DalmatinskaCounty.Whencompareproportionofchildrenwithdisabilitiesinrelation
to all citizens in county we can conclude that biggest proportion of children with
disabilitiesisinKoprivničkoKriževačkaCounty.
Most children in Croatia havemultiple disabilities (43.1%), as shown in table 1.
Most children with multiple disabilities have intellectual disabilities. Intellectual
disability is found in 16.3% of children where 49 % of children with ID have mild
intellectualdisabilities.
Table1.Typeofdisabilitiesinchildrenwithdisabilities
Typeofdisability NumberPrevalence(%)innumberofchildrenwithdisabilities
Visualimpairment 969 3.0Hearingimpairment 1069 3.3Specificlanguageimpairment 12078 37.6Locomotorsystemimpairment 1746 5.4CNSimpairment 6035 18.8PeripheralNervousSystemimpairment 363 1.1Otherorganimpairment 2847 8.9IntellectualdisabilityID 5246 16.3Mentalandconductdisorder 3221 10Pervasivedevelopmentdisorder 1257 3.9Congentialanomalieschromosomopathy
2662 14.6
Multipledisabilities 8673 43.1
MostcommondiagnosisofCNSimpairmentaredystoniain2161children;juvenile
cerebral palsy in 1627 children and epilepsy in 1510 children. The most common
chromosomopathyissyndromeDownin675children.
Accordingtothosestatisticaldata,fivechildrenwithdisabilityattemptsuicide,36
of themwere abused. Childrenwith disability in Croatia are included in educational
process,21555ofthem,astherecordshows.Themostcommoneducationprogramisin
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inclusiveconditionwithindividualizedplan,mostlyforchildrenwithspecific language
impairmentilearningdisabilities,multipledisabilitiesandID.
Childrenwithdisabilitieslivesmostlywithinfamily(97.5%),someofthemarein
fostercare(0.6%),and275childrenwithdisabilitiesliveswithintheinstitutions.
V.3.InclusionpoliciesinCroatia
The inclusion requires responding to the diversity of needs among all learners,
through increasing participation in learning, cultures, and communities, and reducing
exclusion from and within education. It involves changes in content, approaches,
structures, and strategies, drivenbya commonvision that coversall childrenand the
conviction that it is the responsibility of the regular system to educate all of them
(UNGEI,2010).Inclusionimpliesadaptationandopennessoftheeducationalsystemto
all pupils, regardless of the type and degree of difficulty, the culture to which they
belong,thelanguageoranyotherpossibledifference.
Inclusive education in Croatia is in the process of developing the capacity of the
school to adapt to all its students. The education system in the Republic of Croatia
affordsallchildren,studentsandyoungpeople–includingchildrenwithdevelopmental
disabilities, children who are members of national minorities, gifted students and
children and young people in a disadvantaged position – inclusion in the education
systemonalllevels(EASNIE,2017).
Croatiaisaparticipantofallmajorinternationalhumanrightsconventions,suchas
UNESCOConventionontheRightsoftheChild(1989).CroatiaratifiedtheConventionon
Rights of PeoplewithDisabilities (2007) and adopted theFacultativeProtocol for the
Implementation of Convention. The establishment of Ombudsman for People with
Disabilitieswastheonestepforwardinrepressingdiscriminationonthisbasisbutalso
oneveryotherbasisingeneral.
Thedevelopmentof inclusive schoolpractice inCroatia’sprimaryandsecondary
education had been advanced through Act on Education in Primary and Secondary
Schools(OfficialGazette87/08,86/09,92/10and105/10)andthePedagogicstandard
(2008).
The legislative framework is an importantprerequisite for educational inclusion,
but in addition it is important to inform, increase awareness and sensitization of
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stakeholdersintheeducationalprocessaboutchildren'srightsaswellasempowerment
ofteachers,informingandempoweringparentsandchildren(ŽicRalić,2012).
Children with mild disabilities are enrolled in mainstream education, while
childrenwith extensive disabilities are enrolled in special education institutions. The
enrolment process consists of a legally established procedure of assessing the child’s
psychophysicalstateinordertodeterminethemostsuitableeducationprogramandthe
necessary support, methods and teaching tools during the period of compulsory
education (Official Gazette, 102/06). The goal is to provide every child with the
opportunityoflearninginthenaturalenvironmentandthereforethereisatendencyof
placingthechildreninmainstreameducation.
Educational inclusion is implemented according to twomodels of education, full
andpartialinclusion.Fullinclusionimpliestheinclusionofstudentswithdisabilitiesin
mainstream class in which they master the regular curriculum customized to
individualized ways of learning or curricula adjusted to their capabilities. Partial
inclusionmeansthatpupilswithdisabilities(mostlymildintellectualdisability)partof
education (math, language, science) acquire in a separate classwith special education
teacher,andtheotherpart(artsandPE)inthemainstreamclasswithregularteacher.
Theprogramofpartialintegrationisnotimplementedineachschool.
Inclusion requires professional support and spatial, pedagogical and didactic
adjustment in order to ensure suitable education and socialization for children with
developmentaldisabilities.Professionalsintheeducationarea,whoworkwithchildren
withdevelopmentaldisabilities,providesupporttotheirteachersandparents;include
educational rehabilitators, speechand language therapists and socialpedagogueswho
aremembersofschoolexpertteam.Mostlythereareoneamongmentionedexpertswho
providesupport forchildrenwithdisabilities inoneschool,but, still thereareschools
withoutanyexpertresponsibleforchildrenwithdisabilities.Theinclusiveeducationin
Croatia,still,hasnotbeendevelopedtoprovidethesamequalitytoallCroatianpupils.
Croatia followed international trends and made provisions in its national
educational plans, strategies and legislation for the teacher assistant. The teacher
assistantandmobileexpertteamsupportforchildrenwithdisabilities,implementedin
Croatia from 2007, is one of the models of support aimed at improving access to
mainstreameducation.
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Children with special needs who finish primary school can continue with their
secondaryeducation.Studentswithspecialneedswhowanttotakethestategraduation
examcandosowiththeuseofadjustedexamtechnology.Thisisdoneinco‐operation
withtheNationalCentreforExternalEvaluationinEducation.
The statutes and regulations of higher education institutions in the Republic of
Croatia include constitutional principles on the prohibition of every form of
discriminationandtheequalrightofallstudentstogoodqualitystudyprograms.Four
out of sevenuniversities in theRepublic of Croatia (theUniversitiesof Zagreb, Zadar,
RijekaandOsijek)havesetagoaltofacilitateaccesstohighereducationandtoprovide
supportforstudentswithdisabilities.
V.4.SupportprogramsforparentsinCroatia
There is a lack of literature about support programs for parents in Croatia.
Although there is a commonunderstanding that support for families is a vital part of
everysystemofsupportforchildrenwithdisabilities,thatprincipleisoftennotevident
inpractice.
Specificeducationandsupportforparentsofchildrenwithdisabilitiesisprovided
within programs of educational and social institutions. Usually, parents receive
individual support or small group support. Support usually includes topics like
improvingparental skills and teaching aparenthow to support a child in acquiring a
new skill or how to deal with the problem behavior. The support is usually more
informal and the quality of support usually depends on motivation and effort of
individual special teacherorother staff and isnot systematicallydeliveredwithin the
institution.Itisalsonotplannedorevaluatedinmostoftheinstitutions.
Therearesomeeducationpackagesthataredevelopedforfamiliesofchildrenwith
disabilities.Workshops“Let’sgrowtogetherplus”weredevelopedwiththesupportof
theUNICEFoffice forCroatia forparentsofchildrenwithdisabilities.The intentionof
theprogram is giving theparents information, knowledge and skills thatwill support
them in their parental responsibilities and promotion of their personal growth and
competences of the parent aswell as competences of the child. Thoseworkshops are
conductedbyeducatedprofessionalsinvariousinstitutionsforchildrenwithdisabilities
andinNGOs,andtheprogramisbeingevaluated(Starc,2014).
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Programthat is focusedon familiesofchildrenautismspectrumdisorders(ASD)
“Positiveapproachestoautism”isbeingdevelopedwithinESIPPERASMUS+projecton
thebaseofsurveyofparents(Preeceetal,2017).Thegoaloftheprogramistogivethe
parentsknowledgeaboutASDandautismspecificparentingskillsandstrategies(Preece
etal,2017a).
Supportgroupsforbrothersandsistersareorganizedindifferentinstitutionsand
NGOsbydifferentprofessionals.ModelofWagnerJakab,CvitkovićandHojanić(2006)is
usedinsomeNGO’sandinstitutions.
Toconclude,therearesomeinitiativesandactivitiesforparentsupportbutthere
arealotofchallenges:
‐ Supportthatisofferedisoftenprojectbased,itisnotsustainable
‐ Educationprogramsarevariousbutnotsystematicandconsistent
‐ Thereisnosystematiceducationforparentsacrossthecountry,educationisnot
reachableforallparents
‐ Existingeducationprogramsareoftennotevaluated
‐ When parents are taught to use a specific program there is no follow up,
supervisionnoranyothersupportforthemwhentheystartusingthoseprogramswith
theirchildren
References
1. Benjak,T.ReportaboutpeoplewithdisabilitiesinRepublicofCroatia,Croatian
Institute for Public Health, 2017. Available at: https://www.hzjz.hr/wp‐
content/uploads/2016/04/Invalidi_2017.pdf
2. EuropeanAgencyforSpecialNeedsandInclusiveEducation,Croatia‐Special
needs education within the education system, visited on July 10th 2017
https://www.european‐agency.org/country‐information/ croatia/national‐
overview/special‐needs‐education‐within‐the‐education‐system
3. Igrić,Lj.,Fulgosi‐Masnjak,R.&WagnerJakab,A.Roditeljiidjecasteškoćama,
Centar inkluzivne potpore IDEM. 2014 https://bib.irb.hr/prikazi‐
rad?&rad=763032
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4. Leutar,Z.&Štambuk,A.Invaliditetuobitelji i izvoripodrške,Hrvatskarevija
za rehabilitacijska istraživanja, 43(1):2007 pp 47 – 61
http://hrcak.srce.hr/22099
5. Milić Babić, M. & Leutar Z. Iskustva s ranom intervencijom roditelja djece s
teškoćama u razvoju, Ljetopis socijalnog rada, 20(3):2014 pp 453‐480
http://hrcak.srce.hr/118484
6. Pećnik et al. Kako roditelji i zajednice brinu o djeci najmlade dobi, Printera
Grupa d.o.o. 2013, available at: http://www.unicef.hr/wp‐
content/uploads/2015/09/Kako_roditelji_i_zajednice_brinu_o_djeci_najmlade_
dobi.pdf
7. Preece,D.,Symeou,L.,Stošić,J.,Troshanska,J.,Mavrou,K.,Theodorou,E.&Frey
Škrinjar, J. Accessing parental perspectives to inform the development of
parenttraininginautisminsouth‐easternEurope.EuropeanJournalofSpecial
NeedsEducation,32(2):2017,pp252‐269.
8. Preece, D., Stošić, J., Frey Škrinjar, J., Troshanska, J., Symeou, L., Mavrou, K.,
Theodorou, E. & Trajkowski, V. (a) Education for Families of Children with
ASD. 9th International Conference of the Faculty of Education and
RehabilitationSciencesUniversityofZagreb.17‐19May2017,Zagreb
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VI.GENERALBACKGROUNDINFORMATIONFORLITHUANIA
VI.1.Descriptionforsituationofparentsofchildrenwithspecialneeds
Support for parents of children with special needs is provided by both
governmental and non‐governmental institutions. The goal of both governmental and
non‐governmentalinstitutionsistohelpfamiliestofulfiltheirfunctionsbyadaptingto
changingconditions,withoutlosingtheiridentity.
Thesupportiscloselylinkedtothehealth,educationandsocialsecurityservices.
The Law on the Social Integration of the Disabled of the Republic of Lithuania
(2000) establishes the right of persons with a disability to a complex of medical,
professionalandsocialrehabilitationmeasures.
Medicalrehabilitationiscarriedoutinmulti‐profilehospitals,outpatientclinics,at
home, insanatoriumdepartments.Socialandoccupationalrehabilitationiscarriedout
by municipal care and welfare institutions, social care and welfare institutions,
educational training institutions, social organizations for the disabled, special
professionalandsocialinstitutionsfortherehabilitationofthedisabled.
Especially important is the early rehabilitation services, which determine the
success of further work with the family. They provide early complex assistance to
childrenfrombirthto3yearsold.Andinspecialcasesandupto7yearsold.Theyhelp
toensuretheearlydetectionofchild'simpairmentandtoprovidecomplexassistancein
atimelymannertobothchildrenwithdisabilitiesandtheirparents.Earlyrehabilitation
services are provided as close as possible to the child's place of residence, primary
healthcarefacilitiesandchildren'sdepartmentsofin‐patienthealthcarefacilities.
The Early Rehabilitation Department provides assistance to parents of children
with disabilities s or children with a risk factor for developmental disruption. The
purpose of the department is the medical, psychological and social rehabilitation of
children and families, improving their social adaptation and functioning. Upon
assessmentofthechild'sdevelopment,afterthediagnosisofadevelopmentaldisorder,
all information is provided to parents. A child rehabilitation program is organized,
information on the child'smost appropriatemethods of rehabilitation and education,
and parents are taught how to apply them at home. Parent self‐help groups, support
teamworks.Theinformationissharedwithparents'andspecialistorganizations.
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Eachcitymunicipalityhasestablishedsocialsupportcenterswhosepurposeisto
providesocialservicesandbenefitstoresidentswhocannotaffordtotakecareoftheir
personal(family)lifeindependentlyandwhoneedassistanceinmeetingtheiressential
needsandaddressingsocialproblems.
Family Support Service is set up at the Social Support Center. Its purpose is to
provideassistanceinsolvingthecrisissituationinafamily.ThemainfunctionofFamily
SupportServiceistoindividuallyinformandadvisefamilymembersonsocialissuesand
psychological issues,mediate between the client and other social assistance agencies.
Thoseservicesareforfamiliesraisingchildrenundertheageof18whoare inacrisis
situation due to one or several social problems (various dependencies, disability,
poverty,lackofsocialskills,etc.)andwho,duetothecircumstances,arenotabletocope
withthecrisisindividually.Italsoprovidesindividualinformationandadviceonawide
rangeof socialandpsychological issues through telephone,customerhomeandoffice,
mediatedthroughcooperationbetweenspecialistsfromdifferentinstitutionsinsolving
commonissuesofsocialsupportforclients.
Manynon‐governmentalorganizationsoperateinLithuania,theyareconsideredas
equivalent partners in the development of social services, especially in the context of
parents of children with disabilities. In this area, NGOs are the initiators of new and
effective forms of organization of services, and their representatives are invited as
consultantsinshapingsocialpolicy.
Social services are provided by NGOs in two forms: establishing new NGOs
providingservicesorassistanceandsupportprovideddirectlythroughNGOprograms.
VI.2.Nationalstatistics
1table.Numberofchildrenrecognisedasdisabledforthefirsttime
Year 2011 2012 2013 2014 2015Profound 157 147 143 138 156Moderate 718 850 818 1 015 949Minor 1165 1 110 762 767 655Note.FigurestakenfromtheDepartmentofStatisticshttps://osp.stat.gov.lt/statistiniu‐rodikliu‐
analize?hash=06a08946‐fb13‐41ed‐a85e‐edf57950ea82#/
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2table.Generalschoolpupilswithspecialeducationalneeds
2014‐2015 2015‐2016 2016‐2017Specialclassesanddevelopmentalclasses(Partialintegration)
Total 959 986 1023Pupilswithdisabilities 915 929 909Pupilslearningdifficulties 43 53 112Pupilswithlearningdisadvantages
1 4 2
Generalclasses(fullintegration)
Total 34 596 34 032 34143Pupilswithdisabilities 4 407 4 284 4145Pupilslearningdifficulties 29 785 29 388 29567Pupilswithlearningdisadvantages 404 360 431
Specialschoolsandspecialeducationalcenters
Total 3 663 3 638 3680Pupilswithdisabilities 3 390 3 433 3446Pupilslearningdifficulties 271 205 231Pupilswithlearningdisadvantages
2 3
Note.FigurestakenfromtheDepartmentofStatisticshttps://osp.stat.gov.lt/statistiniu‐rodikliu‐analize?hash=06a08946‐fb13‐41ed‐a85e‐edf57950ea82#/
In 2015‐2016 about 2,600 disabled children received social services in day care
centres.3
Therewas29specialschoolsandspecialeducationcentreswith1062children;4
Socialcarehomesforchildrenandyoungpeoplewithdisabilitieswith460children in
Lithuaniain2016.4
Therewere67pre‐schoolestablishmentswithspecialgroupsinLithuaniain2016.
Accordingtothetable31555childrenhaveattendedthoseestablishmentsinurbanand
ruralareas.
3table.Numberofchildreninpre‐schoolestablishmentswithspecialgroups
Total2014 2015 20161 801 1 737 1555
Intellectualdisability 69 56 60Speechandlanguagedisorders
836 832 694
Visualimpairment 18 18 8Hearingimpairment 74 57 66Physicaldisabilitiesandneurologicaldisorders
35 52 18
Complexdisorders 589 561 504Othercases 180 161 205Note.FigurestakenfromtheDepartmentofStatisticshttps://osp.stat.gov.lt/statistiniu‐rodikliu‐
analize?hash=08e0868a‐7428‐4bdc‐8a04‐3554398f7747#/
3 https://osp.stat.gov.lt/informaciniai-pranesimai?articleId=5178560 4 https://osp.stat.gov.lt/informaciniai-pranesimai?articleId=5178560
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In 2016‐2017 about 16976 Children with special educational needs were
integrated into general‐purposegroupsofpreschool education institutions.5 In2016‐
2017about37760childrenwithspecialneedswereintegratedingeneralschools(table
4).
4table.Generalschoolpupilswithspecialeducationalneeds
2014‐2015 2015‐2016 2016‐2017
Specialclassesanddevelopmentalclasses(Partialintegration)
Total 959 986 1023Learningdisadvantages 1 4 2Intellectualdisability 495 504 479Learningdifficulties Speechandlanguagedisorders
11 18 40
Visualimpairment 1 3 1Hearingimpairment 17 8Physicaldisabilitiesandneurologicaldisorders
7 6 14
Behavioraland/oremotionaldisorders 1
Many‐sideddevelopmentaldisorders
13 13 40
Complexandotherdisabilities
382 395 375
Complexdisorders 31 33 69Othercases 1 2 2
Generalclasses(fullintegration)
Total 34 546 33978 34090Learningdisadvantages 404 360 431Intellectualdisability 2 553 2 413 2326Learningdifficulties 6 482 6 110 5952Speechandlanguagedisorders
17228 16837 16723
Visualimpairment 85 86 90Hearingimpairment 177 185 199Physicaldisabilitiesandneurologicaldisorders
551 550 536
Behavioraland/oremotionaldisorders
451 460 446
Many‐sideddevelopmentaldisorders
232 312 332
Complexandotherdisabilities
759 684 609
Complexdisorders 5 624 5 981 6446Othercases ‐ ‐ ‐
5 https://osp.stat.gov.lt/statistiniu-rodikliu-analize?hash=69881f7a-ef0d-4e81-b5b3-637f4cb9ce4f#/
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Specialschoolsandspecialeducationalcenters
Total 3639 3606 3647
Learningdisadvantages 2 ‐ 3
Intellectualdisability 1650 1660 1643
Learningdifficulties Speechandlanguagedisorders
1
Visualimpairment 68 67 59
Hearingimpairment 202 178 172
Physicaldisabilitiesandneurologicaldisorders
92 112 105
Behavioraland/oremotionaldisorders
71 15 14
Many‐sideddevelopmentaldisorders 31 43 41
Complexandotherdisabilities 1319 1339 1393
Complexdisorders 2 5 16
Othercases 197 185 201
Note.FigurestakenfromtheDepartmentofStatisticshttps://osp.stat.gov.lt/web/guest/statistiniu‐rodikliu‐analize?portletFormName=
visualization&hash=2de1e301‐befe‐441b‐af67‐ed7d04779452#/
VI.3.InclusionPoliciesinLithuania
In1991havingapprovedthefirstLawofEducationoftherestoredindependence
of theRepublicofLithuania(1991), therightofeverypersonwithspecialeducational
needs to develop and choose the educational institution closest to the home was
established.Thisprovisionhasbecomethebeginningofformaleducationandintegrated
educationforpeoplewithspecialeducationalneeds.
At that time, therewas a huge variety of education systems and their financing
modelsinEurope:one‐trackcountries,two‐trackcountries,multitrackcountries.Itwas
decidedtochoosethe"multitrackcountries"model,hopingtooffertheopportunityto
choosetherangeofservicesthatwouldensureboththecoherentfunctioningofboththe
generalandthespecialeducationsystem(Aidukienė,Labinienė,2003).Theeducationof
children with special educational needs is provided by compulsory and universal
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educationschools,inspecialcases,schools(classes)forpupilswithspecialeducational
needs6.
AccordingtotheLawonSpecialEducation(1998),peoplewithspecialeducational
needs are “children and adults who, because of congenital or acquired impairments,
have limitedopportunities forparticipating in theeducationalprocessandsocial life”.
According to the Law, special educational needsmay bemild,moderate, profound or
severe.Groupsoflearnerswithspecialeducationalneedsshallbedeterminedandtheir
specialeducationalneedsshallbedivided intominor,moderate,profoundandsevere,
according to the procedure laid down by the Minister of Education and Science, the
MinisterofHealthandtheMinisterofSocialSecurityandLabour.
Article14of thenewlawamendingtheLawonEducation(2011)definesspecial
educational needs as a need for assistance and services in the educationprocess that
occurs due to being exceptionally gifted, having congenital or acquired disorders, or
disadvantages in a person’s surroundings. The Minister of Education and Science,
Minister ofHealth Care andMinister of Social Security and Labour of theRepublic of
Lithuaniaenactedthelegislativeactonstatements/identificationofpeoplewithspecial
educational needs and levels of special educational needs on 13 July 2011. This
legislativeactsetoutastatementtoidentifypupilswithdisabilities,learningdifficulties,
disadvantagesandlevelsofspecialeducationalneedsaccordingtoA,BandC(basedon
theOrganisationforEconomicCo‐operationandDevelopment’stripartitecross‐national
categorisationsystem:pupilswithdisabilities,learningdifficultiesanddisadvantages).
Article 14 of the new law amending the Law on Education (2011) states: The
purpose of education for learners with special educational needs shall be to help
learnerslearnandtobetrainedaccordingtotheirabilities,attainaneducationleveland
acquireaqualificationbyrecognisinganddevelopingtheirabilitiesandcapacities.The
educationof learnerswith special educational needs shall be organised in accordance
withtheprocedurelaiddownbytheMinisterofEducationandScience.
In the current system of education in Lithuania, general education schools are
dividedintomainstreamschoolsandschools forpupilswithspecialeducationalneeds
(specialschools).
Regardless of which school will be chosen, a pupil with SEN should have the
opportunity to learn according their abilities and to acquire education and 6 LR švietimo įstatymas (2011)
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qualifications, recognizing and developing capacities and powers. Accessibility of
education must be ensured by adapting the school environment, providing
psychological, specialpedagogical, special and socialpedagogical assistance,providing
technical supportmeasures for educationat school and specific teachingmaterials. In
thegeneraleducationschool forpupilswithspecialeducationalneeds“...personswho
haveprofoundandseverespecialeducationalneedsareaccepted”.7
Theeducationofpupilswithspecialeducationalneedsisbeingimplementedbyall
schoolsprovidingcompulsoryanduniversaleducation,othereducationproviders,and,
inothercases,‐schools(classes)designedforpupilswithspecialeducationalneeds.
Education inschool forpupilswithspecialeducationalneedscanbeofferedonly
for pupils with inherent or acquired disabilities with profound or severe special
educationalneeds.8Pupilswithprofoundorsevereeducationalneedscanbeeducated
ingeneralschoolsforpupilswithspecialeducationalneedstill21yearsofage.9
Typesofgeneraleducationschoolsforpupilswithspecialeducationalneed:special
schools,specialeducationalcentres,specialeducationalmultifunctionalcentresandetc.
Special schools are designed for pupils aged 7 (6) to 20 years old to study in
accordance with adapted primary, basic education programs and social skills
developmentprograms.Specialeducationalcentresaredesignedforpupilsaged7(6)to
20 years old to study in accordance with adapted primary, basic and secondary
educationprogramsandsocialskillsdevelopmentprograms,byobtainingthenecessary
educationassistanceandprovidingmethodologicalassistancetootherschools‘teachers,
educational assistance specialists in adaptation of general education programs,
educationalenvironment,selectionofspecialtrainingmaterials,counsellingofparents
(orcaretakers),whichenablestoimprovethequalificationofteachersandeducational
assistance specialists. Special school – special educationalmultifunctional centres are
designedforpupilsaged7(6)to16yearsoldthathaveprofoundorsevereeducational
needs to study according adapted primary and basic education programs and social
skills development programs; other non‐formal education programs for children and
(or)adultnon‐formaleducationarealsobeing implemented in this centres,providing
opportunities for the cultural, social and other services necessary for the local
community. 7 LR švietimo įstatymas (2011) 8 Mokyklų, vykdančių formaliojo švietimo programas, tinklo kūrimo taisyklės, 2011 9 LR švietimo įstatymas (2011)
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Organization of education in special schools. Schools, in meeting the special
educational needs of pupils, must ensure education in an adapted educational
environment, provision of educational support, special teaching and learningmaterial
andtechnicalsupport.10
Specialclassesanddevelopmentalclassesaredesignedinspecialschools.Special
class‐theclassforpupilswithinherentoracquireddisabilitieswithprofoundorsevere
special educational needs. Developmental class – the class for pupils with „mild,
moderate or severe intellectual disability, multiple disorders or other developmental
disorders“.11
Educationalcurriculumsareadaptedandindividualizedtakingintoaccountpupils'
special educational needs, needs of parents (caretakers), and recommendations of
pedagogicalpsychologicalserviceoreducationalsupportspecialist.Pupilswithspecial
educational needs due to intellectual disability are educated according to an
individualized primary, basic education programs, which may result in continuing
vocational training or education in accordance with the program of social skills
development.12
Pupil's individualized education plan – is a learning plan tailored to his or her
abilities and learning needs; it is designed to help the pupil to reach the higher
educational achievements in accordancewith his or her powers, to develop personal
responsibility,skills,and fulfil thesetgoals.An individualeducationplan isdeveloped
for a pupil whose specific educational needs cannot be met by a general school
curriculum. Individual education plan is designed according pupils' intellectual
disabilities (mild, moderate or severe), the form of learning, the way in which the
teachingisorganized,andthepurposeoftheschoolimplementingtheeducation.
Social skills development programs can be implemented in schools/ classes for
pupils with special educational needs, according recommendations from Pedagogical
Psychologicalservice.
School implementing social skills development program can choose the form of
organization, educational content is delivered through subject and other activities,
10 Mokinių, turinčių specialiųjų ugdymosi poreikių, ugdymo organizavimo tvarkos aprašas (2011). Valstybės žinios, 2011-10-11, Nr. 122-5771 11 Mokyklų, vykdančių formaliojo švietimo programas, tinklo kūrimo taisyklės, 2011 12 Mokinių, turinčių specialiųjų ugdymosi poreikių, ugdymo organizavimo tvarkos aprašas (2011). Valstybės žinios, 2011-10-11, Nr. 122-5771.
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takingintoaccountthepowersofthepupil,theschool'sspecialists,andtheteachersof
subjects.InordertoensuretheeffectivenessofeducationofpupilswithSEN,allschools
shouldprovidethenecessaryeducationalsupport.
Educationalsupport– isasupportprovidedbyeducationalspecialists forpupils,
their parents (caretakers), teachers and education providers. It includes vocational
guidance,educationalinformation,psychological,socialpedagogical,specialpedagogical
(speechtherapist,specialteacher,tiflopedagogue,surdopedagogue)supportandspecial
assistance(signlanguageinterpreter,teacherassistant),schoolhealthcare,counselling,
teacherqualificationimprovementandothersupport.13
AccordingtheLawonEducation(2011)completionofformaleducationprograms
may, for thepurposes of special education, take longer than the establishedperiod.A
learnerwhostudiesatintervalsmaycompletetheprogramsbywayofdiscretemodules.
Individuals with special needs who study according to programs that meet national
standards for attainment of an education level may attain such a level and/or a
qualification. In certain cases a qualification is acquired without having attained an
education level. Pupils with special educational needs can complete formal education
programsatshorterorlongerthanafixedtime,canstudyintermittently,cancomplete
these programs with separate modules. Pupils with moderate, profound or severe
special educational needs can be educated till 21 years of age in general schools
designedforpupilswithspecialeducationalneeds.
Atpresent, the three‐levelpedagogicalpsychological assistance for childrenwith
special educationalneedsmodel (Inkliuzinisugdymas irkomandinėpagalbamokiniui,
2011)isbeingimplementedintheLithuaniabytheseinstitutions:14
SchoolChildWelfareCommission,
localpedagogical‐psychologicalservices,
TheNationalCentreforSpecialNeedsEducationandPsychology.
Each institution carries out its functions. First level – School Child Welfare
Commission.Functionsofthiscommissionare:
13 LR švietimo įstatymas (2011) 14 Inkliuzinis ugdymas ir komandinė pagalba mokiniui. Metodinės rekomendacijos mokytojams, švietimo pagalbos teikėjams, 2011
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1. toprovideprimaryspecialpedagogical,psychological,socialpedagogical,social
assistanceforpupilsintheirimmediateenvironment;
2. toprovidemethodicalassistanceforteachers,parents;
3. to carry out a preliminary assessment of children with special educational
needs;
4. toanalysetheeffectivenessoftheeducationalassistanceprovidedtothepupil.
Second level–pedagogical‐psychological service.Theirmainareaofactivity is to
provideassistancetothepupil,teacherandschool:
1. psychological,socialpedagogical,educationalinformationassistanceforpupils;
2. specialpedagogicalassistanceforpersonswithspecialeducationalneeds;
3. information,expertandcounsellingassistancetoparentsandschools;
4. psychological, social pedagogical, special pedagogical assistance for schools
withouteducationalassistancespecialists.
AccordingtotheLawonEducation(2011)theChildWelfareCommissionappoints
educational assistance, while the pedagogical‐psychological service designates special
educationprovision.AChildWelfareCommissionshallcarryouttheinitialevaluationof
learners’specialeducationalneeds.Apedagogical‐psychologicalserviceshallevaluatea
learner’s special educational needs (except those occurring because of exceptional
talents)intermsofpedagogical,psychological,medicinalandsocio‐pedagogicalaspects.
Specialeducationshallbeassignedby theheadofapedagogical‐psychological service
and – in certain cases – by the school principal with the consent of the parents or
guardians,inaccordancewiththeprocedurelaiddownbytheMinisterofEducationand
Science.
Third level –National Centre for Special Needs Education and Psychology is the
responsible institution under the Lithuanian Ministry of Education and Science for
developing the system of special pedagogical and psychological support in Lithuania.
MainfunctionsoftheCentreare:
1. to coordinate the first and the second level of the special pedagogical and
psychologicalsupportsystem;
2. to organise training programs for specialists of the municipal pedagogical
psychologicalservices;
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3. toprovideadviceonassessmentorsupervisionondifficultorproblematiccases
to psychologists, speech therapists and special teachers working in the municipal
services;
4. to construct or adapt psychological and achievement tests and make
recommendationsfortheiruseinthemunicipalpedagogicalpsychologicalservices;
5. todevelopand adapt the legislation acts that follow the implementationof the
LawonSpecialEducation;
6. tocooperatewithmunicipalpedagogicalpsychologicalservices;
7. to provide methodical support for the municipal pedagogical psychological
services.
References
1. Aidukienė, T., Lapinienė, R. (2003). Vaikų, turinčių specialiųjų poreikių,
ugdymo tendencijų apžvalga tarptautiniamebei Lietuvos švietimo reformos kontekste
(1990–2002 m.). Specialiojo ugdymo pagrindai (Sud. J. Ambrukaitis, A. Ališauskas, R.
Labinienė,J.Ruškus).Šiauliai:Šiauliųuniversitetoleidykla.
2. Inkliuzinis ugdymas ir komandinė pagalba mokiniui. Metodinės
rekomendacijosmokytojams,švietimopagalbosteikėjams,2011
3. LRšvietimoįstatymas(2011).
4. LRSpecialiojougdymoįstatymas(1998).
5. LRsveikatosapsaugosministro2000m.gruodžio14d.įsakymasNr.728„Dėl
Vaikųraidossutrikimųankstyvosiosreabilitacijosantrinioirtretiniolygiopaslaugų
organizavimoprincipų,aprašymoirteikimoreikalavimų“.
6. Mokinių, turinčių specialiųjų ugdymosi poreikių, ugdymo organizavimo
tvarkosaprašas(2011).Valstybėsžinios,2011‐10‐11,Nr.122‐5771.
7. 2015–2016 ir 2016–2017 mokslo metų pagrindinio ir vidurinio ugdymo
programųbendriejiugdymoplanai.TAR,2015‐05‐08,Nr.6951.
8. Mokyklų, vykdančių formaliojo švietimo programas, tinklo kūrimo taisyklės,
2011,2016‐04‐20.
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VII.GENERALBACKGROUNDINFORMATIONFORTURKEY
Turkeyisademocratic,secular,unitary,parliamentaryrepublic.Itissituatedatthe
crossroadsoftheBalkans,Anatolia,MiddleEast,andeasternMediterranean.Turkeyis
also surrounded by the Black Sea in the north, the Aegean Sea on the west, and the
MediterraneanSeaonthesouth.ThecountryhasalsoaninlandSeaofMarmarawhich
connectstheBlackSeatoAegeanSea.
Capital cityofTurkey isAnkaraandofficial language isTurkishwhich iswritten
withLatincharacters.ThepopulationofTurkeyis80,477,188millionaccordingtothe
censusof2017.ThemajorcitiesareIstanbul,Ankara(capital),Izmir,BursaandAdana.
VII.1.Descriptionforsituationofparentsofchildrenwithspecialneeds
ParentswithdisabledchildrenarethemostvulnerablegroupofpeopleinTurkey
because their needs are not acknowledged and identified by the policy makers,
professionalsineducationandmedicalfield,andotherfamilymembers.
Parental involvement in the entireprocess of special education is very crucial for
thebenefits of the children.Thequalityof the interactionbetweenparents and schools
system depends on by the families’ socio‐cultural characteristics and parents’
understanding of the disability, which may have effects on the child’s educational and
socialdevelopment(Diken,2006).Theimportanceofthisinvolvementhasrecentlybeen
valued,understood,andrecognizedbythegovernment.Therefore,professionalswhoare
competent,culturallysensitiveandwell‐trainedastohowtoreachtoandcommunicate
with parents may play critical roles on meeting parents’ needs and their children’s
educationalachievement.AstudyconductedbyDiken(2006)reportedthatparentsdid
not accept that their childrenhas adisability and it is not a temporary situation.Most
soughtreligioussupportinordertocopewithdifficultiestheyface.Unfortunately,most
oftheprofessionalsinthisfielddonotseemtobeadequateandpreparedwhenworking
with children and their families.Diken (2006) also indicates thatparental involvement
should be encouraged and they also should be part of the decision making process
regardingspecialeducationservicesandfutureeducationalplansfortheirchildren.
Supporting parents of children with disabilities is being more valued and its
importance is more and more recognized in Turkey. Even though there are many
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differentsupportservicesforfamilieswithdisabledchildren,itisfarfrombeingenough.
Aslongastheneedsinthecloseenvironmentofthefamiliesandtheirchildrenarenot
thoroughly acknowledged, recognized, and addressed, there will be neglected and
missing links (e.g., siblings, other close relatives), which will negatively affect the
relationshipsinthefamily.Therefore,continuousandsystematicemotionalsupportto
familiesof childrenwithdisabilitiesplaysakey role inhealing thescarsof the family
members.
Diken (2006) reports that many mothers are left alone by the members of the
familyandgetnosupportfromthem.Mothersreportedthattheywereveryconcerned
about the future of their children if something bad happens to them. Along with
depression,panicandanxiety,manymothersalsodealwithmaritalconflicts,sometimes
divorces.Economicaldistrains,lackoffather’ssupportandresources,beingresponsible
fortoomanytasksmaycompletelynegativelyaffectthemotherifshedoesnotreceive
anyemotionalandsocial support.Therefore, it isvery important todevelopsufficient
emotionalandsocialsupportprogramstoempowermothersandfamiles.
VII.2.Nationalstatistics
National Research on the Disabled in Turkey (DIE, 2005) reported 9 million
disabled people in Turkey,which consists of 12.3% of the general population (Tufan,
Yaman, Arun,2007). Of this population, close to 2million children have disabilities in
Turkey(Eres,2010)(seeTable1and2).
BasiceducationisguaranteedbyconstitutionallawinTurkey.Itismandatory,free,
and under the control of Ministry of National Education (MoNE). Despite for the
opportunity to the open and free access to education, unfortunately, individualswith
disabilities cannot benefit from education in the way that healthy individuals have
accessandopportunities toachieve literacy (Arun,2014). Individualswithdisabilities
areoftenneglectedintheeducationalsystemandschoolsarenotwellequippedenough
to serve these individuals, in terms of educational settings, teachers, other special
educationprofessionals,resources,andeducationalmaterials.
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Table1.TheprofileofthedisabledinTurkey(datafromTurkeyDisabilitySurvey,2002).
TypesofImpairment
Gender
Orthopedic
Impairment
VisualImpairme
nt
HearingImpairme
nt
Speechand
LanguageImpairme
nt
MentalRetardati
on
Multiple
Disability
Total
Male
Count
416.338 194.816 73.083 57.683 139.845158.172
1.039.937
% 40,0 18.7 7,0 5,5 13,4 15,2 100,00
Female
Count
301.490 139.996 62.493 26.279 92.821109.288
732.367
% 41,2 19,1 8,5 3,6 12,7 14,9 100,00
Total
Count
717.828 334.812 135.576 83.962 232.666 267.460
1.772.304
% 40,5 18,9 7,6 4,7 13,1 15,1 100,00DataistakenfromArun(2014).
Table2.Numberofstudentsbetweenagezeroand18inspecialeducation,2004‐05
Typeofdisability % Numberofstudents
Visualimpairments 0.2 49.920Hearingimpairments 0.6 149.760Physicaldisabilities 1.4 349.440Mentaldisabilities 2.3 574080Speechandlanguageimpairments 1 873.600Healthimpairments 1 249.600Emotionalandbehavioraldisabilities 2 249.600Giftedandtalented 2 499.200Total 14 3.494.400Compileddataavailableathttp://orgm.meb.gov.tr/Istatistikler/2007%20yılı%20genel%20sonuç.doc
VII.3.InclusionpoliciesinTurkey
Individuals with disabilities are protected by the special education Law 573
(Cavkaytar, 2006). However, the idea of inclusion is relatively new in Turkish
educational system, which has been around for more than 25 years (Rakap &
Kaczmarek,2010).MoNEisresponsiblefortheorganizationofbothgeneralandspecial
education. MoNE describes the concept of inclusive education as follows: “ Inclusive
education is a special education practice based on the principle that the education of
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individualswithspecialeducationneeds(SEN)continuetheireducationwiththeirpeers
without disability in the official and private schools at pre‐school, primary education,
secondary education, and adult education level by providing them with education
supportservices”(MoNE,2006).
Even though there aremany positive steps thatwasmade in terms of inclusive
educationinTurkey, it isnowknownthatsomeofthefamilieswithdisabledchildren
are not aware of their rights and the services provided for them. Another important
point isthenegativeattitudeandperceptiontowardsinclusiveeducationandchildren
withdisabilities.Childrenwithdisabilitiesandtheirfamiliesareseriouslydiscriminated
and isolated in the school system by classroom teachers and school administrators.
Anotherproblemthatstudentswithdisabilitiesfaceintheclassroomisthecompetency
ofteachers(knowledgeandskills)andlackofimplementationofeffectiveandsufficient
educational services. Lastly, physical conditions of schools and classrooms are not
suitableforeducatingstudentswithdisabilityininclusiveclassrooms.
Eventhoughthenumberofstudentswhoarebenefitingfrominclusiveeducation
inprimaryyearsappearstobeincreasing,itishardtoseethesestudentsinsecondary
educationyearsduetoincreasingandunmetneedsineducationalsettings(seeTable3).
Table3.Numberofstudentsininclusiveclassrooms,2010‐13
Inclusiveeducation
Numberofstudent
2010‐2011 2012‐2013Primaryschool 84.580 147.048Secondaryschool 7.775 14.247Total 92.355 161.295
VII.4.SupportprogramsforparentsinTurkey
Childrenwithdisabilitiesandtheirfamiliesareprovidedwithsomesupportwithin
theschoolsystemandnationalrehabilitationcenters.Usuallyparentsgetsomesupport
individuallyorinsmallgroups,buttheseattemptsarenotenoughtohelpthefamilies.
Teaching some parental skills when dealing with the child or teaching him/her new
skills could be provided within the school systemwith the help of special education
professionals,howeverthis isvery limitedandnotsufficienttosupport families.Some
associations and non‐profit organizations (NGOs) give seminars, run workshops, and
teach some survival to parents; again, these programs may not reach to wider
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population,becausebeingabletocontactwithfamiliesmaynotbeveryeasyforthem.
Another problem is that families may not be followed up to determine if there is a
sustainability in terms of how they implement what they have learned during the
education.ThereisalsonosupportprogramdevelopedbyMoNEorotherorganizations.
References
1. Arun,O.(2014).DisabilityinTurkey:Therisksinbeingdisabledforaccessing
educationalopportunities.MediterraneanJournalofHumanities,IV/1,53‐62.
2. Cavkaytar, A (2006). Teacher training on special education in Turkey. The
TurkishOnlineJournalofEducationalTechnology(TOJET),5(3),1‐5.
3. DIE (Turkish Republic Government Statistical Institute) (2005).Research on
theDisabledinTurkey,Reportfor2005.Ankara:DIEPublishingHouse
4. Diken, I. (2006). Turkish mothers’ interpretations of the disability of their
childrenwithmentalretardation.InternationalJournalofSpecialEducation,21
(2),8‐17.
5. Eres,F.(2010).SpecialeducationinTurkey.US‐ChinaEducationReview,7(4),
94‐100.
6. Rakap, S., & Kaczmarek, L. (2010). Teachers’ attitudes towards inclusion in
Turkey.EuropeanJournalofSpecialNeedsEducation,25(1),59‐75.
7. Tufan, I, Yaman, H., & Arun, O. (2007). Disability in Turkey: Suggestions for
overcomingcurrentproblems.InternationalSocialWork,50(6),839‐846.
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STRESS,COPINGANDWELLBEINGFORPARENTSOFCHILDRENWITH
SPECIALNEEDS:ACROSS‐CULTURALRESEARCHSTUDY
PetruțaRusu1,PhD
AdinaColomeischi2,PhD
1,2DepartmentofEducationSciences,
University“ŞtefancelMare”ofSuceava,Romania
Introduction
Theimportanceofparentalstressinfamilylifehasbeendemonstratedindifferent
studies. In general research shows that parenthood is associated with significant
changes in parents’ life and parenting in itself can be stressful. In the family context,
stressnegativelyinfluencesparents’wellbeing,thequalityoftheirrelationshipandthe
quality of parent‐child interaction. Studies from family psychology analyzed the
influence of different types of stressors on couple and parent‐child interaction (i.e.
minor, major, acute, chronic, external and internal stressors, Bodenmann, 2005). In
general,major and chronic stressors (such as having a childwith special needs ‐ SN)
determinemoreinstabilityanddysfunctioninfamilythantheothertypesofstressors.
Stressassociatedwithbeingaparentofa childSNaffectsparents’well‐beingand the
quality of their parenting. This category of parents represents a vulnerable group of
individuals in each society. Studies have shown that families parenting a child SN
experience higher levels of stress compared to families with children with a typical
development(Delambo,Chung,&Huang,2011;Lee,2013).HavingachildSNrequires
more effort and involvement from parents (i.e. long term psychological therapies,
medical treatments). The stress faced by families raising children with special needs
maycontinueduringadolescenceandadultlifeoftheirchildren,influencingthequality
offamilyrelationshipsonalongterm.
ThestressfacedbyfamiliesraisingchildrenSNmaycontinueduringadolescence
andadult life, influencingthequalityoffamilyrelationshipsonalongterm.Parentsof
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children with SN experience higher levels of emotional distress (Lecavalier, 2006),
depression (Benson, 2006), anxiety (Pakenham, Sofronoff,& Samios, 2004) and social
isolation. This category of parentsmay feel overwhelmed by the problems associated
withtheirchilddisability.Therefore,interventionstohelpparentsraisingchildrenwith
disabilitiestoreducestressandenhancewellbeingareneeded.
TheaimoftheprojectBuildingBridges:PromotingSocialInclusionandWellbeing
for Families of Childrenwith Special Needs is to help parents of childrenwith SN to
improvetheircopingstrategiesandtoenhancetheirparentingskillsinordertofoster
their social inclusion and wellbeing. For parents of children with special needs is
important to know that they arenot alone and that they could rely onpositive social
sourcessuchascounselorsandgroupsofparentsconfrontingwiththesameproblem.
Socialsupportisanimportantresilientfactorforfamiliesofchildrenwithspecialneeds.
Thepurposeofthepresentresearchistoincreaseunderstandingofstress,coping
andwellbeingwithinparentsofchildrenwithspecialneedsthroughpursuingaresearch
todefinetheinfluenceofstressonindividualandfamilyoutcomesinparentsofchildren
with special needs.Themainaimsof this research are:1) to analyze the associations
betweenparentalstress,coping,negativeemotions,emotionregulation,socialsupport,
family communication and parents’ psychological well‐being, 2) to evaluate the
influence of individual variables (coping strategies, negative emotions, emotion
regulation)onfamilyoutcomes(familycommunicationandparents’psychologicalwell‐
being), 3) to investigate the moderating role of parents’ socio‐emotional competence
and social support in the association between stress and parents’ psychologicalwell‐
being.Thehypothesesarebuilton: the theoreticalmodelsof family stressandcoping
(Bodenmann, 2000), the literatureon stress, coping, emotions, family communication,
andpsychologicalwellbeing.
Method
Sample
Totalsample:
Thedata for thepresent studywere collected forma sampleof1259parents (a
totalof796mothersand400fathers,63participantsdidnotprovideinformationabout
gender). From the total sample, 321 parentswere fromRomania, 255 from Portugal,
245parentsfromLithuania,195fromTurkey,130fromSpainand113fromCroatia.The
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distributionofparentsacrosscountriesispresentedinfigure1.Themajorityofparents
(43.6%)werebetween35and44yearsold,25.5%werebetween45and54yearsold,
20.7%ofparticipantswerebetween25and34yearsold,6%between18and24years
old and 0.6 participants were older than .65 years old. On average, families had 2
children(SD=.86,range=1‐8children).Accordingtothesocio‐economicstatusofthe
sample,measuredby family income, 37.7%of parents reported family incomes lower
than500EUR,19.9%,reportedincomesbetween500and1000EUR,14.3%hadafamily
income between 1000 and 1500 EUR and only 18,9 % of parents had a household
incomehigher that 1500EURpermonth. Regarding themarital status of the parents
involvedinthepresentstudy,74.4%ofthemweremarried,12.1%divorced,2.8%were
widowed,4.3%singleparentsand5.6beinginacouplerelationship.
Figure1.Distributionofparentsparticipatinginthestudyacrosscountries
Procedure
Parents from each participating country were recruited through local Special
Education Centers for children and local organizations that offer parent support
services. Special education teachers, school managers, counselors, psychologists and
studentswere involved in thedata collectionprocess; theywere instructedabout the
purpose of the study, the privacy of the data and were asked to distribute the
questionnairestoparentsofchildrenwithdifferentspecialneeds(autism,ADHD,Down
syndrome,mentaldeficiency,physicaldisabilities).Parentsagreedtoparticipateinthe
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studyonavoluntarybasis.TheInstitutionalReviewBoardoftheRomanianUniversity
approvedthestudy.Allparentssignedaninformedconsenttoparticipateinthestudy.
TheEnglishversionsofthequestionnaireswerefirsttranslatedintoeachlanguage
(Romanian,Croatian, Spanish,Portuguese,TurkishandLithuanian language)and then
back translated into English by independent translators. The resulting versions were
analyzedandthediscrepanciesintranslationweresolvedbyagreement.
Measures
Thepurposeofthepresentstudywastocollectinformationaboutdifferentfactors
that influence family relationships for parents having a childwith special needs. This
survey assessed aspects of family stress, coping strategies, communication in family,
emotionsexperiencedbyparents,socialsupport,maritalsatisfactionandparents’well
being.Socio‐demographicvariablesweremeasuredbyitemsaboutage,gender,marital
status, income,numberofchildren,education,and typeofchild’disability.Thesurvey
containedmeasurementsofthefollowingvariables:
Generalstress.OnesubscalefromtheMulti‐DimensionalStressQuestionnairefor
couples(MSF‐P,Bodenmann,Schär,&Gmelch,2008)wasusedinordertomeasurethe
stressorsoriginatingoutsidethefamily(relatedtojob,socialcontacts, freetime, living
situation,finances).TheitemsofthissubscaleareratedonaLikertscalefrom1(notat
all)to4(strong).
Parentalstress.TheParental Stress Scale (Berry& Johnson, 1995)wasused in
thepresentstudytomeasurestressinparentchildrelationship.Thescalecontains18
items,answeredusinga5‐pointLikertscale(1–stronglydisagree;5–stronglyagree).
Parent child interaction. The Emotional warmth subscale from Parental
behaviour Questionnaire (Jaursch, 2003) and Negative communication subscale from
ParentingQuestionnaire(Schwarz,Walper,Gödde,&Jurasic,1997)havebeenusedfor
assessingparentchildinteraction.Theitemsfromthesetwosubscaleswereratedona5
pointLikertscale(1–neverto5–veryoften).
Coparentingwith the current partner was measured with the short version of
Parent Problem Checklist PPC” (Dadds & Powell, 1991). The items assess parental
cooperationonparentalissues.Theresponsesrangefrom1–neverto5–veryoften.
Supportive Dyadic Coping. Dyadic Coping Inventory (DCI; Bodenmann, 2008)
wasusedtomeasuresupportivedyadiccopingprovidedtothepartner(SuportiveDyadic
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CopingbyOneself)andsupportivecopingreceivedfromthepartner(SupportiveDyadic
CopingbyPartner).Participantswereaskedtorateona5‐pointLikertscale(1=very
rarelyto5=veryoften)howoftentheyprovidetotheirpartneremotion‐focusedSDC
(e.g.,Ishowempathyandunderstandingtomypartner)andproblem‐focusedSDC(e.g.I
try to analyze the situation togetherwithmypartner in an objectivemannerand help
him/her to understand and change the problem) and how often they receive support
fromtheirpartners.
Couple Relationship satisfaction. Relationship Assessment Scale (Hendrick,
1988) was used to measure general relationship satisfaction. The scale has 7 items
measured on a 5‐point Likert scale ranging from 1 (low satisfaction) to 5 (high
satisfaction).
Emotional competence. The short version of the Difficulties in Emotion
RegulationScale(Gratz&Roemer(2004)wasusedinthisstudy.Thescalecontains18
items and measures the following dimensions: lack of emotional awareness, lack of
emotional clarity, non‐acceptance of emotional responses, difficulties in emotion
regulationstrategies,difficultiesinengagingingoalsanddifficultiesinimpulsecontrol.
Theitemsareratedona5‐pointscalefrom1–almostneverto5–almostalways.
Religious coping. In the present study we used the Brief RCOPE (Pargament,
Koenig, & Perez, 2000) questionnaire to assess positive religious coping (finding
meaninginastressfulsituation,reappraisingthestressoraanopportunityforspiritual
growth)andnegativereligiouscoping (evaluating the stressfuleventasapunishment
fromGod).Theitemsareratedona4‐pointLikertscalerangingfrom1‐notatallto4–
agreatdeal.
Psychological well‐being/Positive functioning was measured with the
Relationship subscale from the Comprehensive Inventory of Thriving (CIT, Su, Tay, &
Diener,2014).Thescalecontainsthefollowingdimensions:support,community,trust,
respect, loneliness and belonging. The items of this inventory are rated on a 5‐point
Likertscale,from1–stronglydisagreeto5–stronglyagree.
Results
Means, standard deviations and the results of the Mann‐Whitney test for
comparinggenderdifferencesarepresentedinTable1.Theresultsshowedthatfathers
reported significantly higher levels of general stress than mothers, while mothers
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reportedsignificantlyhigher levelsofnegativecommunicationwith theirchildrenand
higher levels of support received from the community compared to fathers. Table 2
providesinformationaboutthecorrelationsbetweenthestudyvariables.
Table1‐Descriptivestatisticsandgenderdifferencesforthestudyvariables
Variable Mean SD Mann‐Whitneytest1.Generalstress .00Mothers 2,19 0,83Fathers 2,40 0,942.Parentalstress .86Mothers 2,23 0,61Fathers 2,22 0,583.Emotionalwarmth .76Mothers 4,43 0,63Fathers 4,41 0,704.NC .01Mothers 2,51 0,81Fathers 2,39 0,855.PRC .74Mothers 2,75 1,08Fathers 2,78 1,046.NRC .26Mothers 1,97 1,02Fathers 1,92 1,017.SDCO .15Mothers 3,94 0,91Fathers 3,84 0,978.SDCP .72Mothers 3,68 1,16Fathers 3,65 1,159.RS .47Mothers 3,38 0,61Fathers 3,42 0,8410.DER .39Mothers 2,39 0,64Fathers 2,42 0,6611.Support .02Mothers 4,21 0,90Fathers 4,06 0,9212.Community .08Mothers 3,67 1,30Fathers 3,61 1,3513.Trust .90Mothers 3,36 0,78Fathers 3,42 1,2114.Respect .27Mothers 3,96 0,70
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Fathers 4,02 0,72 15.Loneliness .20Mothers 2,18 1,13 Fathers 2,24 0,98 16.Belonging .15Mothers 3,48 1,06 Fathers 3,59 1,00 Note:n=295womenand295men,df =293 **p<.01(two‐tailed)
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Table2‐Correlationsamongstudyvariables
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15
1.Generalstress
2.Parentalstress .402**
3.Emotionalwarmth ‐.023 ‐.242**
4.Negativecommunication
.201** .290** ‐.128**
5.Positivereligiouscoping .116** .011 .041 ‐.018
6.Negativereligiouscoping
.047 .173** ‐.025 .047 .573**
7.SDCO ‐.109** ‐.209** .250** ‐.095** .074* .008
8.SDCP ‐.189** ‐.247** .184** ‐.125** .011 ‐.058 .740**
9.Rel.Satisfaction ‐.050 ‐.113** .102** ‐.102** .017 ‐.010 .425** .474**
10.DER .352** .403** ‐.151** .278** .003 .006 ‐.217** ‐.243** ‐.194**
11.Support ‐.146** ‐.229** .175** ‐.071* ‐.166** ‐.181** .234** .203** .196** ‐.225**
12.Community ‐.043 ‐.121** .064* .005 .200** .054 .145** .067* .066* ‐.048 .158**
13.Trust ‐.177** ‐.150** .019 ‐.034 .018 ‐.089* .121** .159** .069* ‐.115** .233** .266**
14.Respect ‐.112** ‐.190** .181** ‐.151** .059 ‐.149** .235** .239** .264** ‐.272** .381** .198** .405**
15.Loneliness .300** .354** ‐.044 .109** .201** .330** ‐.206** ‐.268** ‐.224** .352** ‐.326** ‐.122** ‐.160** ‐.272**
16.Belonging .026 ‐.048 .083** ‐.069* .314** .089* .073* .092** .176** ‐.087** .133** .230** .255** .352** ‐.052
**Correlationissignificantatthe0.01level(2‐Tailed).
*Correlationissignificantatthe0.05level(2‐tailed).
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In order to compare the study variables across countries, we used one‐way
ANOVA. Considering that our data did not meet the homogeneity of variances
assumptionandtheunequalsamplesizes,weusedtheGamesHowellposthoctest.The
meansforthestudyvariablesforeachcountryparticipatinginthestudyarepresented
inTable3.
Table3‐Meansforthestudyvariablesacrosscountries
Gstress Pstress
EW NC PRC NRC SDCO SDCP DERS WBCroatia 2,13 2,09 4,59 2,62 2,09 1,28 3,84 3,85 2,42 3.82Lithuania 1,92 2,14 4,35 2,58 1,86 1,44 4,04 3,86 2,39 3.79Romania 2,09 2,15 4,42 2,40 3,42 2,69 3,97 3,68 2,16 3.71Spain 1,88 2,20 4,19 2,30 ‐ ‐ 3,81 3,66 2,31 3.77Turkey 2,67 2,39 4,31 2,67 3,18 1,73 3,71 3,33 2,85 3.82Portugal 2,67 2,33 4,60 2,31 ‐ ‐ 3,91 3,66 2,37 3.82Total 2,25 2,22 4,42 2,47 2,76 1,96 3,90 3,67 2,39 3.78
Gstress=Generalstress;Pstress=parentalstress;EW=emotionalwarmth;PRC
=positivereligiouscoping;NRC=negativereligiouscoping;SDCO=supportivedyadic
copingbyoneself; SDCP= supportivedyadic copingbypartner;DERS=difficulties in
emotionregulation:WB=well‐being(relationships).
The results showed that parents living in Turkey and Portugal reported the
highestlevelsofgeneralstressandparentalstress.Moreover,thelevelofgeneralstress
reportedbyparentsformTurkeyandPortugalweresignificantlyhigherthanthestress
reported by parents from the other countries (Figure 1, Figure 2), while the level of
parentalstressreportedbyparentsformTurkeyandPortugalweresignificantlyhigher
than the stress reported by parents from Croatia, Lithuania and Romania, but not
significantly higher than the stress of Spanish parents. The findings did not show
significant differences between Turkey and Portugal in terms of general andparental
stress,parentsfrombothcountriesexperiencesimilarhighlevelsofstress.
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Figure2.Generalstressacrosscountries(jobstress,stressrelatedtosocialcontacts,freetime,
livingsituation,finances)
Figure3.Parentalstressacrosscountries
In terms of negative communication in parent‐child interaction, parents from
Turkeyreportedthehighestlevelofnegativecommunicationwiththeirchildren,while
parents fromSpain reported the lowest level. The level of negative communication in
Turkish families was significantly higher than in Romanian, Spanish and Portuguese
families.ThefindingsalsoindicatedlowerlevelsofnegativecommunicationinSpanish
familiesthaninCroatianandLithuanianfamilies.
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Figure4.Negativecommunicationinparent‐childinteraction
Regardingthevariabledifficultiesinemotionregulation,Turkishparentsreported
the highest score (more difficulties in emotion regulations), while Romanian parents
reported the lowest score (less difficulties in emotion regulation). The comparisons
betweencountriesindicatedthattheparentsofchildrenwithspecialneedsfromTurkey
have significantlymore difficulties in regulating their emotions that the parents from
Croatia, Lithuania, Romania, Spain and Portugal. On the other hand, the findings
indicated that Romanian parents regulate their emotions significantly better that
parents from Croatia, Lithuania, Turkey and Portugal. Spanish parents also reported
good strategies for emotion regulation; therewere no significant differences between
SpanishandRomanianparents.
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Figure5.DifficultiesinEmotionRegulationacrosscountries
As shown in FigureTurkish, Portuguese andRomanianparents of childrenwith
special needs reported feelings loneliness at the highest levels compared to parents
from the other three countries. The feelings of loneliness reported by Turkish,
PortugueseandRomanianparentsweresignificantlyhigher thantheonesofCroatian,
LithuanianandSpanishparents.
Figure6.PerceivedLonelinessacrosscountries
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In termsof Supportivedyadic copingbypartner (emotion‐focusedandproblem‐
focusedsupportreceived in timesofstressbyoneparent fromtheother), thehighest
levels of SDCP were reported from Lithuanian and Croatian parents, while Turkish
parentsreportedthelowestlevel.TheSDCPofTurkishparentswassignificantlylower
thattheSDCPreportedbyparentsfromCroatia,Lithuania,RomaniaandPortugal.
Figure7.Supportreceivedfromthepartner
The results regarding the support received from community revealed that
Lithuanian and Croatian parents reported higher levels of support, while Turkish
parents the lowest level. Lithuanian parents reported significantly higher levels of
supportfromcommunitythanSpanish,TurkishandPortugueseparents.Moreover,the
supportreportedbyTurkishparentswassignificantlylowerthanthesupportreceived
byparentsfromCroatiaandRomania.
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Figure8.Supportfromcommunity
Inthefollowingsectionwewillpresentseveralfigureswiththemostimportant
associations between the study variables. All the relationships depicted in the figures
belowarestatisticallysignificantinthedepicteddirection.
Generalstressandparentalstress
Figure9.Therelationshipbetweengeneralstress(jobstress,financialstress,socialstress)and
parentalstress;
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Figure10.Therelationshipbetweengeneralstress(jobstress,financialstress,socialstress)andparental
stressacrosscountries;1‐Croatia,2‐Lithuania,3‐Romania,4‐Spain,5‐Turkey,6–Portugal
Stressandparent‐childinteraction
Figure11.Therelationshipofgeneralandparentalstresswithnegativecommunicationbetween
parentandchild
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Figure12.Therelationshipparentalstressandemotionalwarmth
Stressandparents’well‐being
Figure13.Therelationshipbetweenparentalstressandparents’well‐being
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Stressandcoupleinteraction
Figure14.TherelationshipbetweenparentalstressandSupportivedyadiccopingincouple
(supportprovidedtothepartnerinstressfulsituations)
Figure15.Therelationshipbetweenparentalstressandcouplerelationshipsatisfaction
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Parents’difficultiesinemotionregulationandfamilyinteractions
Figure16.Therelationshipbetweenparents’difficultiesinemotionregulationandnegative
parent‐childcommunication
Figure17.Therelationshipbetweenparents’difficultiesinemotionregulationandsupport
providedtothepartner
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Supportreceivedandparentsrelationshipsatisfactionandwell‐being
Figure18.TherelationshipbetweenSupportivedyadiccopingbypartnerandcouplerelationship
satisfaction
Figure19.TherelationshipbetweenSupportivedyadiccopingbypartnerandparents’well‐being
Moderationeffects
Theresultsofthepresentstudyindicatedasignificantinteractioneffectbetween
generalstressanddifficultiesinemotionregulationinpredictingparents’wellbeing(b
=‐.18,p<.001)CI[‐.29,‐.07].
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Figure20.ThemoderationeffectofDERintheassociationbetweengeneralstressandparents’
well‐being
Inaddition,we foundasignificant interactioneffectbetweenparental stressand
difficultiesinemotionregulationinpredictingparents’wellbeing(b=‐.15,p<.05)CI[‐
.31,‐.01].
Figure21.ThemoderationeffectofDERintheassociationbetweenparentalstressandparents’
well‐being
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Discussion
Thespill‐overofexternalstressintothefamily
The findings of thepresent study revealed that the stressors originatingoutside
thefamily(relatedtojob,socialcontacts,freetime,livingsituation,finances)spillover
into the family relationships and affect parent‐child interactions. The phenomenon of
stressspill‐overoccurswhenstressfromoneareaofaperson’slife(e.g.workstress)is
transmitted to other areas (e.g. family interactions between parents and between
parentsandchildren).Inourstudy,parentsexperiencinghigherlevelsofstressoutside
theirfamily(relatedtowork,financialstress,stressrelatedtothelivingsituation,such
asapartmentsizeandsocialstress)reportedalsohigherlevelsofparentalstress.
Researchstudiesonfamilystressfrequentlyaddressstressspillover,showingthat
family functioningisnegativelyaffectedbydailystressors(Bodenmann,2005;Karney,
Storry & Bradburry, 2005,). These findings are also consistent with results of other
studiesshowinginteractionsbetweendifferenttypesofstressors.Forexample,Karney
et al. (2005) showed that chronic stress could moderate the influence of an acute
stressor on the relationship, meaning that an acute stressor has a higher negative
influenceonfamilyfunctioningwhenachronicstressorisalsopresent.
In addition, another spill‐over effect is indicated by the significant negative
associationbetweengeneralstressandnegativeparent‐childcommunication.Asstress
outsidethefamilyincreases,negativeparent‐childcommunicationhashigherlevels.
Thisstudyalsoshowedthatgeneralstresswassignificantlynegativelyassociated
with couple interactions between parents (support provided to and support received
fromthepartner)andparents’well‐being(feelingsofloneliness).
Thespill‐overofchildrelatedstressintoparents’relationship
Parental stress was significantly negatively related to couple supportive
behaviours (SDC by oneself and by partner) andwith relationship satisfaction. These
negative associations might be interpreted in light of recent research indicating that
child‐related stress impair parents’ relationship quality and worsen couple
communication(Zemp,Nussbeck,Cummings,&Bodenmann,2017).
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Parents’difficultiesinemotionregulationandfamilyinteractions
The results showed that difficulties in emotion regulation reported by parents
(non‐acceptance of emotional responses, difficulty engaging in goal‐directed behaviour
when experiencing negative emotions, impulse control difficulties, lack of awareness of
emotions, limitedaccess to strategies for regulationand lackof emotional clarity) have
been significantly positively associatedwith parental stress and negative parent‐child
communication,while the relationship between difficulties in emotion regulation and
emotional warmth was significant and negative. These findings extend the results of
previous studies relating difficulties in emotion regulation to stress, depression and
anxiety(Bardeen,Fergus,&Orcutt,2012).Similarly,existingstudiesindicatedemotion
dysregulation was negatively related to supportive maternal responses. Another
negativeeffectofdifficultiesinemotionregulationisrelatedtotheirnegativeeffecton
parents’ relationship. Difficulties in emotion regulation have been significantly
negativelyassociatedwithsupportprovidedtoandsupportreceivedfromthepartner
and with relationship satisfaction. In other words, difficulties in emotion regulation
decrease positive coping in parents’ relationship and decrease their relationship
satisfaction. These findings are consistentwith prior research showing that partners’
difficulties in emotion regulation determine criticism, violence and low levels of
relationship satisfaction (Bloch, Haase, & Levenson, 2014; Klein, Renshaw, & Curby,
2016;McNulty&Hellmuth,2008).
The hypothesized moderating role of emotion regulation in the association
betweenstressandwell‐beingwasconfirmedbyourresults.Specifically,difficultiesin
emotionregulationmoderatedtheassociationbetweengeneralstressandparents’well
being and between parental stress and parents’ well‐being. Thus, both general and
parental stresswill have a significantly higher negative effect onwell‐being for those
parents with higher levels of difficulties in emotion regulation.Well‐being of parents
withbetteremotionregulationstrategieswillnotbeaffectedbytheirlevelofstress.
Supportreceivedandparentsrelationshipsatisfactionandwellbeing
Other important resultsofour studyare related to thepositiveeffectof support
receivedbytheparentsontheirwell‐being.Although,bothtypesofsupporthavebeen
significantly positively associated with parents’ well being, the results showed that
support from the partner was more related to well‐being than support from the
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community.Thesefindingsareconsistentwiththeonesofpriorstudies,suggestingthat
positivedyadiccopingispositivelyrelatedtopartners’wellbeing(Rusu,2016).
Implications
The results of the current study support the importance of addressing coping
strategies, emotion regulation and parent‐child communication in the context of
counsellingparentsofchildrenwithspecialneeds.Trainingandcounsellingprograms
forthiscategoryofparentsshouldtargetparents’difficultiesinemotionregulationand
should focus on parents’ individual and dyadic coping skills in confronting with the
majorstressofhavingachildwithspecialneeds.Adaptiveemotionregulationstrategies
mightbeverybeneficialforbothparent‐childandparent‐parentinteractions.According
to the Systemic Transactional Theory (Bodenmann, 2005), when parents are able to
copewiththeirstressandtoregulatetheiremotionsindividually,lowerlevelsofstress
willspill‐overintothefamily
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Well-being cannot exist just in your own head. Well-being is a combina�on of feeling good as well as actually having meaning, good rela�onships and accomplishment.
Mar�n Seligman
What can you do to promote world peace? Go home and love your family!
Mother Theresa
Project no. 2016-1-RO01-KA204-024504
Building Bridges: Promo�ng
Social Inclusion and Wellbeing for Families
of Children with Special Needs